Rare Disease Day

Congenital Diaphragmatic Hernia is a fairly common congenital anomaly but did you know that is also classified as a rare disease?

CDH International has worked with 100’s of other rare disease charities for years to give all of our patients a louder voice.

Please join us this year and wear your stripes to help raise awareness. Please tag us on social media and use the hashtags #rarediseaseday2021, #cdhawareness and #cdhisraretoo

From NORD (the National Organization of Rare Disorders):

Did you know?

• Any disease, disorder, illness or condition affecting fewer than 200,000 people in the United States is considered rare.
• There are 7000 rare diseases
• It’s estimated that (almost 1 in10) have rare diseases.
• 90% of rare diseases are without an FDA approved treatment.

The purpose of Rare Disease Day is to harness the creativity and energy of the millions of people around the world with rare diseases – and the millions who care about and assist them – to raise awareness and generate action. Together we can accomplish that goal. For inspiration on how to get involved in Rare Disease Day, take a look at the examples of past events.

The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct. While each of the more than 7,000 rare diseases are unique, there are many commonalities that unite the rare disease community. In the spirit of raising the profile of the rare disease community at large and celebrating Rare Disease Day, this year NORD will promote specific ways that individuals, organizations and groups can show their stripes.

Learn more at NORD’s Web Site.

Also, I learned about the Twitter hashtag #RareDiseaseTruths and shared some tweets.. cried over some tweet that patients shared.

Normally, I would be lobbying for rare disease in Washington DC this week.  Surrounded by other patient advocates from all across the rare disease spectrum and meeting with our Representatives and Senators.

But Covid.

Again.

So today, everything is virtual and I am bopping between 4 different events.   It was very bad planning have all these major events on the same days at the same time.  I hope the community can coordinate better next year as I really don't want to miss anything!

In DC, or with the many rare disease alliances that CDHi belongs to... I represent Congenital Diaphragmatic Hernia.   And we belong to a lot.

But I am also a founding member of the Rare Advocacy Movement (RAM).   I am so proud of this group.   Started just 3 years ago and so many of the advocates have grown so much thanks to the relationships and connections made in the group.  

So since I couldn't with these incredible people today fighting for the patients on the Hill... here are some photos from a few years ago and even a photo of me on the secret, underground Congressional train...

Do The Things That Scare You

Having a sick baby who was not diagnosed before birth is one way to get thrown into the deep end of the trauma pool and be forced to sink or swim.   There was no time for fear, to sit and cry or to even evaluate the situation.

Patient advocates are forced to act on a dime.  In any situation.   Whether it's to get transportation, medication, therapies or insurance coverage, to make a decision on care or to perform a life saving measure... we do what we have to do at the moment it's called for.   Instinctively.   Because we often have no choices.

This taught me to face my fears head on.   

I had to learn how to advocate for my child.

I had to learn to speak up even when intimidated.

I had to share my opinion, thoughts, wishes and what I knew what was best for my son.   Despite often being the least educated person in the room full of doctors.

When I "decided" to start a charity, I again had to overcome a lot of fear.  I say "decided" because any truly dedicated charity leader will tell you that it's a calling, not a decision.  We don't feel like we had any say so really in the matter.

I had to overcome the feelings of not being good enough, educated enough, old enough, experienced enough.   

Just like I had to overcome fear when my son was born, I had to overcome fear when my charity was born... because someone had to take charge and no one else was.  

To my surprise.. I actually figured out how to do the things that I needed to learn how to do.   

I learned how to do CPR. 

I learned how to clean a ventilator.

I learned how to insert an NG feeding tube.

I can suction out and change a trach. 

I learned how to transport a kid on life support.

I learned how to do those things because I had to overcome my fear.   I didn't have a choice if I wanted my son to live.

I also learned how to incorporate an entity in my state.

I learned to file annual tax returns for a nonprofit.

I learned how to code a web site.

I learned how to start a patient registry and all the privacy laws in all the countries we work in.

I learned how to create our logos and our publications.

I learned how to code a phone App.

I moved overseas for months to set up NGOs.

I argued with medical professionals to open doors to allow patient advocates a seat at the table.  

I learned how to write legislation.

I learned how to write books.

I learned a lot.  All the time.  I still am.

I overcame my fear and insecurities and pushed through to keep the charity moving forward.

The funny thing about overcoming your fears is that eventually you become fearless.

Once, I was too shy and afraid to question my child's doctor when I knew he was lying to me about a piece of medical equipment to try to brush me off.     

20 years later, we speak at the same medical conferences and I can shake his hand as a peer and collaborate with him to help other kids.  

Once, I was so scared to speak publicly that my teeth chattered when I got up in front of an audience and my eyes never left my speech because I was too afraid to look up.   

Now, I give speeches without actual written speeches.  I sometimes do this on national television or in front of crowds of 1000's of people.  And people pay me to do this!   

The first time that I traveled alone, I was so afraid of missing my flight, losing my ticket, doing something wrong... that I did not sleep for 2 days before my trip.   

Last year, I was stranded alone in a country in Africa without any government or banks and no money in my pocket for 3 days.   I shrugged my shoulders and I figured it out.  I had a blast and I never went hungry or without shelter. 

Once, I was so afraid of heights, that even seeing someone else lean over a rail would give me an anxiety attack.   

Now, I'm working on my pilot's license.  Slowly, but I will eventually get there.   I've learned how to land and to get out of stalls... and I wasn't even afraid.

The key to overcoming fear is to just keep stepping forward until you can fly.

The Wrong Kind of Awareness

4 years ago today, a television crew landed in my office to interview me for a segment of a crime television show.

They set up their cameras in the long hallway of the charity's office and took hours to set up, put me together, film and then pack everything up - for a 3 minute spot.   

It seemed like an insane expense on their behalf but they said talking to me was integral to the storyline.

They weren't there to learn about Congenital Diaphragmatic Hernia.

They weren't there to solely share the story of one of our patients.

They were there to report on the stolen identity of one of our babies who had passed away.

I was in the story because I was the one who had to tell this little girl's mother that her child's photos, story and their grief had been stolen and used for profit and attention.

This is was not at all how we wanted to raise CDH Awareness on national news.

This is not at all what I ever thought would be a job duty as president of a nonprofit.

That phone call was one of the hardest that I've ever had to make.   I knew this family, prayed for this baby, grieved for this baby as I watched her parents grieve publicly and it broke my heart to have to have that conversation.

The conversation never would've happened if a few members of our Board didn't have eagle eyes and notice that something wasn't right about the new "grieving mom" who joined our charity.   When they looked at photos this woman posted on Facebook, one of them recognized baby Eden's beautiful face.   

Then the questions started, the research, the investigation and when we determined that yes, this baby's ID had been stolen... the parents and the police were alerted.

Then there was a camera crew in our office.

Eden's mom is a powerhouse.  She's worked relentlessly to raise awareness of CDH and infant death and to keep her daughter's memory alive.  When the police told her they couldn't do anything because of the laws in her state... she said that was not good enough and called the media until True Crime Daily took her story.

While this is the wrong kind of awareness that we wanted for CDH.... it was the right thing to do to try to stop identity theft and to raise awareness so that other grieving parents can possibly protect their child's identity.

Sadly, this wasn't even the first time that our charity has had to deal with this issue.

So we make the tough phone calls.

We stay alert.  

We have to do more than just raise awareness, research, support families.   We have to love on these families, protect them and defend them when needed too.

Charity work is hard, emotional work.  Blog posts, videos and cameras are just lights and sparkle.... the work itself is hard, dirty, upsetting, draining. 

We could've kept quiet... kept our distance from the situation... declined the interview..... but you cannot lead if you cannot be brave and set examples for others to do the right thing and speak up.   I'm proud to work with Board that are courageous and have strong integrity.

If Eden's parents could be strong during this ordeal... we owed it to them to be strong too.  So we were.

This was not the way we wanted to get a TV crew in our office.  

You can watch the segment at Family says Baby Eden 'catfished' after passing away at birth | Truecrimedaily.com

My "Why". My Son.

The Story of Shane Torrence, My Son.

I married my high school sweetheart and thought life was planned out.  The goal was to finish college, then medical school as my dream had always been to be a doctor.  Instead, life has a way of throwing plans aside and I was pregnant before our first anniversary. 

 

I went to my first prenatal visit to an Ob-Gyn clinic affiliated with the closest hospital, 30 miles away.  Everything looked good, until 3 weeks later when I started to bleed. I was terrified. I was only 7 weeks along and I knew the chance of a miscarriage.  During that visit to the clinic, the doctor performed an ultrasound. The baby was alive!  He was moving, he even seemed to wave!  Words can’t describe the relief I felt.

 

It was after that doctor’s visit that my nightmares began. They plagued me every night for the rest of my pregnancy. They were always the same; the baby was born, a boy, laid upon my chest, and then when the cord was cut he turned blue. The doctors took him away and I was left screaming “Where is my baby? What’s wrong with my baby?” over and over until I woke up on my tear-stained pillow. It wasn’t long before they invaded my daydreams also.

 

On August 26, 1992, during my third appointment, I told my doctors that I thought something was wrong but they all said I was a nervous “first-timer”. I was diagnosed with a urinary tract infection, given a prescription, and sent home. A week later, I was back at the doctor’s office complaining of stomach pains. I was given more antibiotics and sent home. On September 10th, the pains returned. I went back to the clinic and was sent home, again.

 

By October 22nd, I weighed 136 lbs, up 26 lbs from my pre-pregnancy rate. The baby started a case of hiccups that lasted on and off for the next 3 months.

 

Thanksgiving came and went with family celebrations. Maybe it was the pregnancy or maybe it was all the turkey I ate, but I was up to 150 lbs; the extra 40 pounds seemed to be all in my stomach.

 

During the second week of December, I went for another ultrasound. All of my doctor’s visits had been uneventful but my nightmares continued and after weeks of begging for another ultrasound, the doctors gave in. My mother and Jeremy were there with me. There were only us, the doctor, and a nurse in that small room, no trained ultrasound technician. We were in that room for over an hour and the doctor told me that everything looked normal. I was not given a picture of the ultrasound, though it is common for expectant mothers these days to be given at least three pictures. At my next appointment I had to ask for a picture. It was quite an attractive view of my baby’s backside.

 

During the last month of my pregnancy, I worked on the nursery constantly. I painted Precious Moments angels for the wall, sewed curtains and blankets, and sterilized all the baby clothes and equipment I collected from showers, yard sales, and hand-me-downs from my nephew, Clint. I was up to 160 lbs with only a little extra weight in my face and breasts; the rest was in my stomach. I looked like a snake that had swallowed a watermelon.   I had no idea that wasn’t normal and no one around me seemed concerned either.

 

On January 18th I came down with what I and the doctors thought was the flu. I started to dehydrate and Braxton-Hicks contractions began. When my fever reached 102F, I went to the emergency room. I was hooked up to IVs and stayed overnight. The next day I was released and I started to bleed. I went into false labor, went to the hospital, and was sent home though I still continued to bleed. Two days later, I almost fainted at home. I had a hard time keeping my balance and even fell in the shower. I was scared to death, but finally, after 3 days, the bleeding stopped. The baby barely kicked and I worried constantly. With less than a month to my due date of February 7, 1993, my nightmares became more frequent and casted a dark shadow over the end of my pregnancy.

 

At 6:00 a.m., on January 28, 1993, my water broke. The bed was soaked and after assuring Jeremy that it definitely was my water breaking, we prepared to go to the hospital. Jeremy called the doctor while I took a bath. The contractions hadn’t started yet and there was no way I was going to get on a delivery table until I shaved my legs first.  We were at the hospital by 7:30 and I was leaking amniotic fluid constantly. The car seat was soaked, the hospital stretcher was soaked, and the delivery table was soaked. I had watched films on giving birth and I didn’t remember all this fluid in the films!

 

Our families arrived by 9:00 a.m. and filled the waiting room. We are both blessed to come from large, healthy families. Soon my contractions became noticeable. From 9:00 a.m. to 4:00 p.m., they remained bearable and I only dilated 1 cm. With every contraction, now 5 minutes apart, my nightmare invaded my mind. I only mentioned this nightmare to Jeremy once or twice and to my doctors; I didn’t want to worry our families over something that seemed like a one-in-a-million chance. I was never more wrong.

 

At 6:00 p.m., I started to beg for pain killers. I was given 2 shots of Demerol and at 6:30 p.m., I had a epidural. I was fully dilated and started to push. The baby’s head seemed to be stuck in the birth canal.

 

The doctor performed an episiotomy and at 6:55 p.m. my son made his entrance into the world with the help of forceps. With only the doctor, a nurse, an anesthesiologist, and Jeremy in the room, the baby was laid on my chest as the doctor cut the umbilical cord.

 

Then my nightmare came true.

 

The baby turned blue as he tried to cry, with only little whimpers coming out of his tiny mouth. Jeremy had just left the room to announce to the world that he had a son. The nurse grabbed the baby and took him to the other side of the room, which was equipped with medical paraphernalia. The doctor delivered the placenta while I repeatedly asked; “Is he OK?”. The baby was taken out of the room and over the hospital intercom blared “Code red, Newborn Nursery”. I was in a state of shock; my nightmare was really coming true. For a while, I could only lay there, left alone on the delivery table, absorbing this fact. Jeremy came in and we both knew that the intercom operator was talking about our son. Jeremy went to tell the families but when he entered the waiting room, he broke down crying. I began screaming “Where’s my baby? What’s wrong with my baby?”. My doctor came in to stitch up the episiotomy and the tearing that was caused by delivering the baby by forceps. He wouldn’t answer my pleas, only did his job and kept quiet while listening to my screams and threats. I was starting to yell that I was going to get up off that delivery table and hunt my baby down when a pediatrician came into the room, an hour and a half after my son was born.

 

In such a small hospital the staff was little and the pediatrician and respiratory therapist had to come from home.

He was cold as he said, with no expression on his face, “By x-ray we can tell your son has many problems. He was born with multiple, severe birth defects that affect his lungs, heart, and reproductive system. He has a Congenital Diaphragmatic Hernia, which means there is a hole in his diaphragm and organs in his chest cavity preventing him from breathing. He will need surgery to correct all his problems. We have sent for a helicopter to transport him to a trauma center. Tell him good-bye because this will probably be the last time that you will see your son alive.” Then he left me alone on that table. Jeremy came in and I told him what the doctor had said. He went to tell our families and his father, whom we all affectionately call “Pop”, came in. It was the only time I had ever seen this big, strong man cry. He was a preacher, and being raised Catholic I wanted my baby baptized in case anything happened to him. Pop wasn’t prepared to do this, materially or emotionally. He prayed with me as I cried.

 

Jeremy and a nurse helped me off of the table and into a wheelchair. They wheeled me down the hall to a small room that contained an incubator, IV poles, a respirator, monitors, and my son. I was only allowed to see him from the doorway, he looked so tiny at 6 lbs 9 oz. Tubes and wires covered him. He had black hair and looked as if someone had given him a crew cut, but that was how his hair came in. He looked perfect on the outside, but on the inside he was struggling to survive. The nurse said “We’re putting you in a single room so you have privacy.”  I knew the real reason that they were wheeling me to the geriatric ward. Only one other baby had been born and I could have had a room on the maternity ward all to myself but the staff had decided it would have been better to separate me from the other mother and baby if my son, Jeremy “Shane”, didn’t survive.

 

My sister, Trisha, and her boyfriend at the time took Jeremy home so that he could grab some clothes and take off for the trauma center to be there when Shane arrived. The pediatrician came into my room, surrounded by our family, to tell me that the trauma center he had ordered the helicopter from had called to tell him that their helicopter was broken. He then called the next closest trauma center, in North Carolina, and ordered their helicopter. I asked if I could see Shane before they took him and he told me no. After my family bombarded him with questions, he left. I called my neighbors, who were the dearest landlords we will ever have, to ask them to stop Jeremy and send him back to the hospital. They already knew; small town word of mouth had already started and Shane was only 3 hours old.

 

The helicopter crew arrived at the same time Jeremy did. I asked them a million questions as I filled out the consent forms. “What are his chances?” “Have you ever seen a baby with his problems?” “Is the weather safe for flying?” They comforted me, assured me, and gave me a chance to tell my son how much I loved him as they wheeled him into my room in his incubator. He was awake! He looked at me with those intense blue eyes that most newborns have. It was as if he was asking me for help. He looked directly at me, out of a room full of people. He knew that I was his mother. I felt my heart breaking. I will never forget that look or how wonderful the helicopter crew was, especially one of the flight nurses, Ed. He was an angel sent to us in our darkest hour to give us the hope that the hospital hadn’t. Around midnight, my son was taken away as I listened to the helicopter blades break the silence of that cold night.

 

That night I couldn’t sleep. Jeremy’s brother, James, drove him to the trauma center. My mom stayed at the hospital with me. The rest of our families went home to prepare for the long days ahead. I called the hospital P.I.C.U. where Shane was taken to check on him and to give the staff permission to perform procedures. I was young, ignorant, and on pain killers, yet I was in charge of making decisions that would save or end my son’s life. I thank God my mom was with me. I started the ritual of pumping my breast milk every 3 hours. I barely had any strength left to operate the manual pump, my arm muscles were weak from pulling up and pushing during labor, but I was determined to do this; to give my son the best nutrition and to do something for him that the medical staff couldn’t.

 

My father came the next morning and picked up my mother and me to go to the trauma center. I left the hospital 18 hours after giving birth, despite protests from my doctors. As I was being wheeled out of the hospital, the other new mom who had delivered that night came to wish me the best and offer her prayers. I don’t remember her at all, but I apparently nodded and thanked her; at least that is what I am told happened. After a 2 hour drive, we made our way up to the P.I.C.U.. I could barely walk and sitting was almost impossible. Labor was nothing compared to the bruising and sutures I had from the episiotomy and forceps. But the pain in my heart was worse than any physical pain

 

The first time I walked into the P.I.C.U. I was overwhelmed. No one told me what to expect. It was constructed of 2 large rooms with beds lined up against the walls. Sick children were everywhere. Children awake and playing video games, children in comas, children on life support. Among these children was Shane. He looked even smaller than the night before. He had IVs in every limb and the ventilator took every breath for him. He was sedated and paralyzed from the medications. Yet despite all the medical equipment, he was the most beautiful baby I’d ever seen (of course I’m a little prejudiced, like all mothers). The ventilator was giving him 420 breaths a minute to keep his lungs from collapsing and a heart and lung bypass (E.C.M.O.) machine stood beside him as a precaution in the event that his heart and lungs quit.

 

The surgeon came and introduced himself as Dr. M. and scheduled surgery for that Monday, 2 days later. I had no idea of what he was explaining to me, I just agreed to everything and put my son’s life into his and God’s hands.

 

We were lucky enough to get a room at the local Ronald McDonald House and finally some sleep.

 

That Monday, Shane was in surgery for 6 hours. Finally, the surgeon came in. The surgery went well and Shane was given a 50% chance of survival. We were told that if all went well, he could be home in 2 weeks.

 

The next few weeks left Shane holding his own but not improving as much as we had hoped for. I pumped breast milk regularly, and when I didn’t have the strength, Jeremy helped me. When Shane was 2 weeks old, Jeremy went back to Virginia to start his new job and I stayed at the Ronald McDonald House at night and the hospital during the day. My days consisted of eating, sleeping, pumping, and keeping vigil at Shane’s bedside. We brought toys and clothes from home for him; including a stuffed Precious Moment’s angel pillow.

 

When Shane was 3 weeks old, I held him for the first time. A brave nurse, and dear friend, juggled tubes and wires to place Shane in my arms. I held him for over 5 hours. I would have held him forever if I could have, but my breasts were becoming engorged. I wish someone would have warned me about that. Jeremy held Shane for the first time a week later. All of the members of the nursing staff were more than just the people who took care of Shane, they were friends and for a long time, family. Rachel, Shane’s primary nurse, immediately “adopted” him. She referred to him as “her baby” and she made sure he got the best care, even if it meant standing up to the doctors to get it.

 

Shane came down with his first infection at a few weeks old. It was one blood infection after another, and in between, he came down with pneumonia. It seemed he would only get over an infection when another one would start. He was sedated and paralyzed by medication for most of his first 3 months. In total, Shane had over 20 infections (blood, urinary tract, and kidney) and pneumonia 5 times.

 

When you live this type of life, you become very close with the families of the children you meet. They are the only ones who truly know what you are going through. I prayed for many other children, and the list became longer with each passing day. P.I.C.U.'s are like war zones. Children battle for their lives. Parents battle for their children. The medical staff battle disease, armed with medication and knowledge. A lot of these battles are lost. The first child I watched die was a 6-year-old little boy with multiple problems. He died the second day Shane was in the P.I.C.U.. He was in the bed beside Shane’s. I tried to ignore it; I couldn’t handle it. I had never been this close to death before. A little girl was put in that same bed space hours later. She was born on the same day as Shane, with the same problem as Shane had. Her mother was single and the same age as Jeremy and I. This baby girl fought for 2 weeks. The little girl died. I wanted to comfort her mother but it hit too close to home, I just walked out, went to bathroom and cried. I knew Shane could be next. I will always regret not going up to that mother and holding her as she grieved. We have known dozens of children who have died since then and they have each taken a piece of my heart with them.

 

I met another mom of a child with this birth defect who had a little boy, a month older than Shane, that died at age 2 months. She gave me more strength in her strength than she could ever know. Rhonda was there for me even after Preston died. When another mom lost her little girl from complications after a heart surgery, Rhonda was there, a month after Preston died, to give her comfort and to help guide her through the funeral arrangements. I will never forget the selfless generosity that she gave everyone, even while still grieving for Preston. How can we send a man to the moon but not prevent all this pain and needless death on Earth to innocent, little babies?

 

At 4 months old, Shane underwent surgery again, a procedure that was not supposed to be needed. By this time, I had spent many hours at the hospital’s medical library and was becoming pretty knowledgeable about Shane’s condition; to the annoyance of his doctors. I looked at every x-ray and the results of every test. Through my studying, I learned of a procedure that involved repairing the defect with use of muscle from the abdominal wall. I begged Dr. M. and his partner, Dr. O., to try this instead of using the Gore-tex (nylon) patch they intended to use. The Gore-tex couldn’t fight infection and wouldn’t grow with Shane, which meant it would have to be replaced as Shane grew. They insisted they had never heard of this and even when I gave them articles taken from medical journals, they refused.

 

The tension between us was growing thicker every day. They were surgeons from one of the top 10 hospitals in the country, how dare I even think to question them? I wasn’t worried about their egos, only my son’s health. Shane was now so unstable that there was no way he could be transported to another hospital, so I reluctantly gave in.

 

Weeks later, and still on oxygen and a ventilator, Shane got his trach. By now, the surgeons and I were butting heads constantly. Shane continued to come down with infections and I continued to act like a tigress protecting her cub. I questioned the surgeons’ decisions and they questioned mine. They were not used to dealing with a patient’s mother for such an extended amount of time.

 

Soon after, Shane came down with pneumonia. The oxygen level his blood had went so low that it caused brain damage. He was now blind, deaf, and what some people would call a “vegetable”. Jeremy and I wouldn’t give up until Shane did, and he wouldn’t either. We argued with the surgeons, who now wanted a D.N.R. (Do Not Resuscitate) order. We refused and had to go up in front of the ethics committee. The meeting was full of accusations, from both sides, and I spoke through choked tears. When it was over, the doctors did not get their D.N.R. order and care for Shane was continued. Rachel was beside us the whole way.

 

The next few months went by slowly. Shane was seen by neurologists who said that he would never get any better, but we didn’t listen. We knew God had a special plan for Shane. Shane started to interact with people and show discomfort at about 7-months-old. His trach site was starting to erode and Dr. M. changed the brand of trach. His trach site grew worse. I went to the medical library and researched to find different brands. When I learned that trachs could be made to order and specified to fit the trach site so that the erosion would be minimal, I asked the surgeon to change the trach brand. He told me that there were only two types of trachs in the world and that we had tried them both. I knew he was lying to me. I suppose I had become an annoyance, but Shane’s site was so bad that it threatened to open the main artery in his throat. When I presented Dr. O. with illustrations from medical journals, along with manufacturers’ phone numbers and addresses, the surgeons avoided me for weeks. I had to leave notes for them on Shane’s bed because they would only make rounds before visiting hours and all my questions were answered by other doctors. I wasn’t on a quest to be right; I simply wanted to stop the pain that that type of trach must have been causing Shane. After about a month, the surgeons got tired of arguing and changed the trach brand. Shane’s trach site immediately got better and healed, though he will always have a noticeable scar there.

 

The nurses and respiratory staff were wonderful, I went out to eat with a few of them, and Jeremy and I went out with them and double dated a few times. They were, and are, friends in every sense of the word. They took the time to try to cheer us up or distract us from Shane’s problems. They bought Shane clothes and toys and spent hours playing with him, even though he couldn’t respond very well, if at all. They went beyond the call of duty, and we will always be grateful.

 

The flight nurse, Ed, that bought Shane to the trauma center, checked in on him often, bought him a stuffed animal and a flight pin, and even gave us a tour of the helicopter. Rachel became one of Shane’s three godmothers, along with my sister, Christie, and my sister-in-law, Teresa.

 

At eight-months-old, Shane was still on the vent but stable. We started to make plans to take him home. The Ronald McDonald House closed down for renovations and I was taken in by other families for 2 months. They let me into their homes, took me back and forth to the hospital, and treated me like family, even though they had sick children of their own. I contacted home health agencies in Virginia, but the surgeons refused to let Shane go back to our home because we were too far from a trauma center. Instead, they wanted Shane to go the nearest chronic care facility, 3 hours from our home. We refused and learned CPR and how to work the medical equipment. We had to go in front of the ethics committee again. After another heated discussion, the doctors agreed to release Shane if we moved closer to the hospital. They never thought we would leave our families and move to North Carolina. I started to look for a house near the hospital and set up home health care. One of our friends gave Jeremy a job.

 

After looking at rentals for weeks, we found we could not afford to move. I called a few local churches to see if any of their parishioners had places to rent. A local church pastor announced our situation to his congregation and a church member, Jackie, made it her mission to help us find a home. She organized a barbecue, which was announced on a local television station, and raised enough money for us to put a down payment on a home with payments that we could afford. Jackie was a Godsend.

 

The doctors still did not want to release Shane, even after everything was set up. They said that he wouldn’t live to make it to the parking lot. We were determined to get him home anyway and on November 29, 1993, after 10 months, we took Shane home. We later learned that the surgeons had a money pool going over how long Shane would survive once he left the hospital. Dr. O. bet 2 weeks, Dr. M. bet 24 hours. We are happy to say that they both lost.

 

With home health nurses and equipment, we started on another leg of our long journey. Shane quickly settled into his nursery, with his painted cherubs looking over him from the walls. I tried my best to keep Shane’s room looking like a nursery and not a hospital room, despite his ventilator, oxygen tanks, feeding pump, and monitors. We had nurses 16 hours a day and I watched him for 8 hours.

 

Our second day home, during my shift, our electricity went out. Shane’s vent battery kicked in; it had an hour internal battery. I took him off his oxygen concentrator and hooked up a tank. I frantically called the power company, who told me a car had run into a generator and the power would be out for at least another 2 hours. Shane was on their emergency power list, but there was nothing else they could do. I called our medical equipment company and they talked me through hooking the vent up to a boat battery, and then the director came out to sit with me until the power came back on.

 

Shane’s first Christmas was the best Christmas we’ll ever have, even though we couldn’t go home to our families or to our new niece, Kirstin, and nephew, Frankie, healthy babies, born to my sisters. I love them like they were my own. Those jealous feelings went away and were replaced by relief that they wouldn’t have to go through what Shane did. When we put up the Christmas tree, Shane started to look at the lights. He could see! Our very own Christmas miracle, after we were told he would never regain his sight!

 

My parents traded us their ’88 Aerostar mini-van for our tiny ’91 Escort so that we could transport Shane and all of his equipment to his doctor appointments. An anonymous and I’m certain, wonderful person donated a double stroller so that we could carry Shane, his ventilator, his oxygen tanks, suction machine, diaper bag, feeding pump, and other medical equipment. Shane has shown us the truly wonderful side of humanity. So many strangers helped us out in our time of need.

 

We have had many ups and downs since Shane’s been home. He wasn’t gaining weight from the formula he was sent home on, so his nutritionist decided to try to switch his formula to a higher calorie formula that was milk-based. Shane had a severe allergic reaction to the formula and went into anaphylactic shock. We almost lost him. We now know he is allergic to all milk products, eggs, chicken, and red food dye. We have to keep an Epinephrine dose with us at all times. Even if a drop of anything containing milk touches his skin, he can go into shock.

 

We turned Shane’s first birthday into a major event; we didn’t know if he would ever have another. I spent 3 days painting Precious Moments clowns on his cake and decorating our kitchen. We couldn’t have open flames around Shane, so I make one out of construction paper to put on his candle. Our tiny home was filled with family and friends. Shane was oblivious to all the activity, but he did manage to accidentally put his hands in the cake. We actually got a picture that the parents of “normal” one-year-olds get to take of first birthdays! Life seemed good again.

 

Shane slowly progressed. He still couldn’t eat by mouth, he was fed by a feeding tube that was inserted down his nose into his stomach. He remained on the vent and oxygen and we all got used to having nurses in our home. Rachel and a few other nurses from the hospital joined our home nursing company to come work with Shane. Nurses came and went, a few stayed on permanently. They all became members of the family.

 

When Shane was 15-months-old, a new nurse, Ana, after undergoing training, was working a night shift. At 6 am, she lightly tapped on our bedroom door and asked me to come to Shane’s room. As I got halfway there, I heard Ana screaming. I ran into Shane’s room and looked at my baby. He was blue, his eyes were open, but they were rolled into the back of his head. I screamed for Jeremy. He came in, saw Shane, and ran to call 911. Ana was screaming and shaking Shane. He was still on the ventilator, she hadn’t even started CPR. I had to push Ana out of the way, and thankfully, everything I learned about CPR came back to me. I took Shane off of the vent, hooked up the ambu bag to his trach, yelled to Ana to turn up his oxygen, and checked Shane’s pulse. His heart had stopped. I started CPR and finally Ana regained control  and helped. Jeremy came into the room and told us an ambulance was on the way. He started to check the ventilator, which had been alarming since I first came into the room. Ana had emptied the humidification trap to release the collected vapor and forgotten to close it. The ventilator must have been alarming for at least ten minutes. The first thing we learned in our training was that if the ventilator alarms and you don’t know why, you take the patient off of the ventilator and manually respirate them until you fix the problem. Ana had left Shane on the vent. Imagine trying to breathe through a very small straw that had no oxygen. That’s how Shane felt. I fired her on the spot. After 10 minutes of CPR, Shane started to come back. By the time the ambulance got there, he was fine. Of course we took him to the hospital anyway, and he was released the same day. Ana was never disciplined by the company or the state nursing board. We will never forget what it looks like to see our baby dead, and we are more cautious about the nurses we let take care of Shane, in fact, we are probably neurotic about new nurses.

 

At a routine check-up, an x-ray showed that his sutures were giving way and that he would need another surgery. By now Shane was off oxygen, and only on the vent at night. He was interacting with us, starting to roll, and his smile lit up a room. In August of 1994, Shane underwent his 3rd major surgery. Everything went as planned and two weeks later he was home.

 

That October, Shane was doing great and I got to make him a Halloween costume. He and his 3 cousins were firemen and Dalmatians and his stroller was converted into a fire engine.

 

Thanksgiving came and we got to go to Jeremy’s family’s house to celebrate. At Christmas, we went back to Virginia and I got to do all the things that I had wished for during the Christmas I was pregnant. Jeremy even played Santa Claus. Shane now played with his toys, rolled around in the wrapping paper, and could go from room to room without equipment and tubes. It’s amazing what parents of healthy babies take for granted. The first time I could actually walk Shane around was like magic. It was like Shane and I were dancing in our own little world and he was almost “normal”.

 

Shane turned 2-years-old in January of 1995. His cake this year was a hypo-allergenic, applesauce cake. His cherubs have been removed from his walls and replaced with more “boyish” pictures of Looney Tunes characters. Shane came off his vent in May. On the 4th of July, he went into respiratory distress and we went to the emergency room. He had emergency surgery, his 4th, and went home 2 and half weeks later, off oxygen. This past October, he needed yet another surgery. He went through surgery number 5 and came home after 5 days. We make frequent trips back and forth to the hospital for viruses and for appointments to all the many specialists involved in Shane’s care. We don’t know when and if Shane will need another surgery. He never does anything by the book. Yet another Christmas came and I hoped against hope that we could possibly receive another miracle. I prayed nightly that God would heal Shane and prevent him from suffering through more surgeries. In early December, we went for a routine check-up with Shane’s surgeon and an x-ray was taken. I have learned how to read these x-rays and was scared when I saw a mass. It wasn’t a tumor. The doctor’s say it is scar tissue, but Jeremy and I say it is the touch of God because whatever it is, it’s holding his organs straight and as long as that happens, he won’t need another surgery. He gave us yet another miracle and I believe that Shane will not need future surgeries. Of course I am terrified that we have used up all of our miracles; most people never receive even one. They say you stay on this earth until you finish your work and I worry that Shane has already finished his. He is so young but he has touched so many lives and forever changed ours.

 

As I write this, Shane will be 3 in 2 weeks. He now wears hearing aids and glasses. I heard him cry for the first time this past summer when we started to use a Pacimuer Valve, a small valve fit over his trach that allows him to make noises by teaching him to exhale through his mouth and nose. He started to crawl after his fourth surgery and is “cruising” now. God willing, he will walk soon. The feeding tube in his nose was removed and replaced with a more permanent one placed directly in his stomach through his abdomen. He is starting to eat and drink by mouth and maybe someday, when he can eat as well as he needs to, the tube in his stomach will be removed. He can’t talk yet, but he is very expressive with his facial expressions. His trach will be out this spring. He runs the house and gets into everything. He’s a stubborn as a mule, but I suppose that’s what has kept him here. It’s impossible to discipline him and where most children learn not to climb or get into things after they fall once or twice, Shane is so used to pain, that when he falls or we pat him on the butt to keep away from things that could hurt him, he laughs hysterically.

 

I still get into arguments with doctors and nurses, but I know how to choose my battles. I have alienated quite a few medical professionals, but I know Shane and his medical history best because I deal with it every day of our lives. The latest battle was with a nurse who wanted to put Shane in a hospital room with 2 preemies when he was admitted with a virus. After asking to be put in a private room and told “no”, I had to go into my “mom from hell” mode to get us moved and within 5 minutes we had a private room. There was no way I was going to subject those two tiny babies to Shane’s virus when they already had their own health problems to fight. Unfortunately, many of us moms with sick kids have had to learn about the “mom from hell” mode. Jeremy has supported me all the way. We no longer go to the hospital where Shane spent his first 10 months.

 

Because of Shane, and our experiences of having a child with this birth defect, I started a support group. It is the only support group of its kind in the world. This defect strikes 1 in every 2500 babies. The cause is not yet known. It is not a prejudiced birth defect. It affects babies of healthy families, of parents of any age, of any color, of any religion, and any financial status; no matter how good the prenatal care. Most are found during routine ultrasounds. It can strike alone or with other birth or genetic defects. Fifty percent of babies born with this do not survive. Most survivors of this defect do not have any complications (other than feeding problems) or more than one repair.

 

I now know, after researching that the “flu” I had during my pregnancy, along with stomach pains, what I then thought was “more amniotic fluid that I had seen in birthing videos”, and all the weight gain just in my stomach was undiagnosed polyhydramnios, excess amniotic fluid. Polyhydramnios is an indicator of fetal abnormalities. If my doctors had diagnosed me correctly maybe they would have diagnosed Shane’s problems by ultrasound and we could have been prepared and had him at a trauma center better equipped to care for him.

 

I swore to myself that if I could help it, I would try to prepare other parents of children with this birth defect. These parents need to be better informed so they can make educated decisions for their child’s health care. They need to know they are not alone. Most people have never heard of this birth defect, and if they are lucky, they never will. I started this support to help these parents the way Rhonda helped me. I wrote a newsletter in my kitchen, took it to a printer (who donated the service), and mailed it to a couple hundred parents and doctors. In 12 months, we now have families plus hospitals, universities, and research centers across the country and in Canada, Europe and Australia in our membership. The response has been overwhelming; this support group has been needed for forever.

 

Updated 11/10/97

 

I wrote that story almost 2 years ago, but it seems like a million years. Reading it, I realize I was still in my “martyr stage”; a stage all of us parents of disabled children go through. Now, I’m back to “normal people stage” and Shane is almost 5. He is walking (actually running around the house and leaving a trail of toys behind him), eating a few ounces by mouth at a time, is completely off the ventilator and oxygen, and had his trach removed a year ago. He wears glasses and hearing aids and is going to a preschool for the deaf. He begs constantly to watch the SAME episode of Sesame Street over and over again; I guess that’s typical pre-school behavior. We only have “respite” nursing care at home now- no more strangers practically living with us. His nurse goes to pre-school with him twice a week, to take care of his feeding and medications while he is there. We no longer go to doctor appointments every other week; now we go every other month. He still winds up in the hospital a few times a year for viruses and pneumonia, but luckily they have been short visits. No more physical therapy (Shane has reached all his PT goals); only occupational and speech therapy now, with visits from a sight therapist to keep an eye on his vision. He has a Mic-Key feeding button now, which is actually helping to anchor his stomach into place. He throws tantrums, pouts, and flirts, like most “normal” kids his age, he truly can melt me with just a smile. Looking at him now, it’s hard to believe all we went through. Jeremy and I doing well. We are now living the “American Dream”, ok, the warped version, but it’s a dream! We bought a house, have settled down in North Carolina, Jeremy has had a wonderful job for a few years now, and I have Shane and the support group to keep me busy and on my toes.   Shane still carries around that stuffed Precious Moments’ cherub doll (ok, so it’s “baby” #5, the first 4 fell apart from all the trips to the washing machine, but he doesn’t know that).

 

Updated 7/5/98

 

Shane is doing really well- still carrying around “Baby”, watching Sesame Street non-stop, eating much better by mouth, has learned 10 sign-language signs, and starts home-school this fall (after going rounds with the local school board who refused to put him in the county’s only deaf class and wanted him in the L.D. class instead- where no one knew sign language, even though the deaf class is only 1 year ahead of him and has only 3 students). He plays with cat, loves going outside and riding in the car, and loves to be read to. He makes the silliest faces and has a wonderful sense of humor- you just can’t help but smile when he does. I feel like the luckiest woman in the world to be chosen to be this wonderful little boy’s mom.

 

Updated 4/25/99

 

Shane is now 6 years old and doing better than ever. He hasn’t been hospitalized for over a year and started home-school last fall. He still watches Sesame Street far too much, “baby doll” (#10. Shhhhh- the others fell apart.) is still with us, and he loves to look at books. He now recognizes 20 signs and consistently does 10, and the biggest news- he’s talking!!!! He says “Daddy” (figures! Lol) and “eat”. He follows Jeremy around like a puppy and his favorite thing to do is hop in his dad’s truck and ride again (he doesn’t care where he goes, as long as he’s riding. Haha). He helps to dress himself and starting to learn to pick up after himself a little. School and 2 new cats have helped him overcome his textile aversions. He loves the cats and they’re great with him and really gentle. He caught a virus last fall and somehow (the doctors can’t figure it out), his hearing and sight have improved!!!! Not bad for a kid they said would never see or hear. His eyeglass and hearing aid prescriptions have changed for the better and he is responding to normal speaking voices without the hearing aids. We are sure this is what led him to finally be able to talk. Next month, he is scheduled for a tonsillectomy, because the virus caused inflammation of his tonsils and adenoids and the swelling hasn’t gone down after 6 months. We’re hoping that after the surgery he’ll be able to talk more and start to eat.

 

Jeremy and I are doing really well, better than ever and have gotten really close after the last year’s traumas, with the fire, hurricane, 2 tornadoes, another miscarriage, personal problems, and all the infertility procedures. For the first time, our major problems don’t include Shane’s medical problems, just “semi-normal” problems - it’s wonderful! After working for a horrible company for a few months, I started my own web site design company in February and we are doing better than my wildest dreams already. We have employees, an office, clients, and a good reputation. I love my work, and with the company, the support group, home-schooling, remodeling, and raising a family, life is hectic- but I wouldn’t change a thing. We are so blessed to have been given so many miracles, to be given each other and Shane. Life can turn around in a split second and though it may never be the same, it doesn’t mean it can’t be good.

 

Updated 9/99

 

Shane was born on January 28, 1993 with Left-Sided CDH, ASD, Hypospadius, Left Pulmonary Sequestration, Microcephaly, High Palate, and Undescended Testes, yet he was the most perfect child in the world to us (our slightly biased opinion). He spent his first 10 months in the P.I.C.U., overcoming pneumonia 4 times, over 30 blood, kidney, and urinary tract infections, brain damage, blindness, deafness, and 2 CDH repairs. Fighting the doctors, we brought him home, trached and vent and oxygen dependent. He regained his sight a month later and 2 years later the trach, oxygen, and vent were gone. By the time he was 3 years old, he was walking, had developed his own means of communication, and had survived more hospitalizations for pneumonia, viruses, and even coding at home once from a ventilator malfunction. At 4 and a half he started going to a deaf preschool and when the time came for kindergarten, we made the decision to homeschool him because our local school system was not adequate to meet all his needs. By the time he was 6 years old, he had regained his hearing (the audiologist never could figure out how- we call it a miracle), was terrorizing the cat, destroying the house with toys, using Sign Language, and worshipped Sesame Street (we soon learned every word, of every song, of every episode…).

 

In July he started coughing so we took him to his pediatrician, who was very afraid of Shane’s medical history but we live in the sticks and don’t have many options for local doctors. After demanding an x-ray we saw the x-ray film- the entire left side of his chest was whited out as if someone had taken paint to the x-ray. We left the pediatrician’s office and went straight to Shane’s surgeon. We all thought it was pneumonia and he was admitted to the hospital and put on antibiotics. When it didn’t clear up and he got worse, we guessed he had reherniated (the x-rays were so bad you couldn’t see any organs at all on that side) so he went into surgery. He had reherniated- for the 6th time. Shane never had much diaphragm to work with and the empty space between his lung and his diaphragm never filled, so it created a vacuum and basically it “sucked” the Gore-tex up. Apparently he had been reherniated for a while and the Gore-tex was wrapped up like a ball and had torn a tiny hole in his stomach and in his lung, allowing formula and stomach bile to enter his lung. This is called a gastroplueral fistula and is so rare that there are only a handful of cases in the last 30 years. We only found a few research articles on it and Shane’s surgeon had never seen anything like it before. She repaired the hernia and sutured up the holes and we thought we’d be going home in a few days, but the pneumonia got worse. The hole in his stomach was so high up and in such an awkward place that the sutures didn’t hold. Shane was also so malnutritioned because of a lack of calories with the formula he was on (he never did decide that eating by mouth wasn’t a bad thing) that his body couldn’t heal properly. We decided to pump him with extra calories through his intestines and keep his stomach drained so that his lungs would clear and he would heal. Through it all he was a happy little trooper. He played in the hospital, rode around in a wagon, the nurses were tripping over toys (matchbox cars make a very cool sound when they hit tiled floors), and we had to have a room with a VCR so he could watch Sesame Street. We spent almost 2 months in the hospital and when we came home he still was fed through his intestines, his stomach was still being drained, he was on antibiotics, and he had to sit up all the time, even while sleeping. We came home the beginning of September, deciding that if the holes didn’t close by the first of November he would have had enough nutrition to have surgery again.

 

On September 9th we went for our weekly visit to see Shane’s surgeon. He was coughing a little, but we thought that was a good thing because he was clearing his lungs finally. Everything looked good and we drove the hour trip back home. All the way home, the kid who always looked out the car window and smiled at all the transfer trucks wouldn’t take his eyes off me. He stared at me for an entire hour and for an entire hour I worried and wondered about why he was doing that. The next day he wanted me to sit beside him and play with him all day long. It was the first day in months that I didn’t work (even while in the hospital) and just sat and played with him and held him. He was never a real clingy child and I wondered then if we should take him back to the hospital, but I didn’t know what to tell the doctors, “He’s clingy”. I stayed up with him all night that night and finally went to bed when Jeremy got home from work at 11am that Saturday morning.

 

September 11th- Jeremy woke me up at about 4pm. His parents were visiting and Shane was “acting funny” so I got out of bed. When I went into the living room, Shane was sitting in the floor, surrounded by toys, Sesame Street blaring on the television, holding his best friend, “baby” (a stuffed Precious Moments pillow) and his Mimi (Grandma) was doing chest p.t. on him. He was coughing and the ends of his fingers were a little blue. I started to give him an albuterol treatment and sent Jeremy to the store to get a bulb syringe to see if we could clear his throat for him because he kept pointing to his mouth. I finished the treatment and started doing chest pt with Shane sitting in my lap. He was getting a little bluer so I called 911 and told them to send an ambulance just in case. One minute he was sitting there, seemingly ok except for the cough, and then he just passed out. I laid him down and tried starting beating his chest and shaking him to wake him up. Jeremy walked in just as he passed out. He was turning blue and I couldn’t see his chest moving. I tried to get a pulse but I couldn’t. I called 911 again, screaming “Where is the ambulance, he’s coded. I called 5 minutes ago and we only live 2 blocks from the hospital!!!!!”, all the while trying to do CPR. I handed the phone to Jeremy’s mom so I could do mouth-to-mouth and when I went to blow in I could hear gurgling. I could barely get air in.

 

Jeremy’s mom was on the phone and running around the house getting me the oxygen tank, ambu bag and anything else I screamed for (God bless that woman for being there and being calm and being such a huge help). While I was doing CPR, his chest tube blew. I was flashing back to the day he was born throughout it all- I could hear words coming out of my mouth, I was doing CPR mechanically without thinking about it, and yet an entirely different conversation and experience was going on in my head. It was like I was watching and not participating and all I could think was “Please God, no, please God, no….”.

 

The ambulance finally got there. It was probably only 10 minutes from the first 911 call but it seemed like forever. I TOLD them I was riding along; they didn’t want me in the ambulance. They had an ET-tube in Shane and were trying to get an IV line in. We got to the hospital and the staff wouldn’t allow me in the crash room. I stood outside the door screaming that I was his mother and that they didn’t know his history and I was no typical mom and they had better kill me before they were keeping me out of that room. One of the doctors finally relented when I started rolling off Shane’s medical history and medical terms that he probably couldn’t believe were coming out of this strange woman’s mouth who obviously didn’t look like a medical professional, having not even had time to brush my hair and wearing a stained sweat suit (stained from Shane). When I finally got in there I talked a nurse into finding Jeremy (who had followed us to the hospital) and bringing him in and talked the doctor into calling Shane’s surgeon (thank God for Dr. Taylor explaining to him who we were and what we knew, the doctor’s attitude toward us did a 180 after that phone conversation). Jeremy and I just stood there, holding each other, and watching the monitors. They couldn’t shock Shane because he still had systolic pressure. It took an hour to get a good line in him (and surgery to get it). There were a dozen people in there working on him and every 10 minutes or so the doctor came over to us and told us that they weren’t getting any response, even after pumping him with Epinephrine. I only left the room for a few minutes to call my family.

 

In what seemed like only seconds, 2 hours had passed and then I had this calm come over me. I always told other parents that they would “know when it was time to let go”. Now we knew it was time. After 2 hours and pnuemothoraces (air in his chest cavity from all the bagging), his diaphragm probably totally gone, and his brain irreversibly damaged, Shane was gone. Shane was gone before we even left the house. The doctor came over to us again and we told him we knew it was over. I asked them to keep working on him long enough so that we could say a prayer and Jeremy and I could hold him when they stopped. All the doctors and nurses held hands with Jeremy, his parents, and me and even the doctor said a prayer. We held him when they stopped bagging him. I was so numb and I didn’t want to let him go and at the same time I just wanted to run away. We left so they could clean him up and they brought a rocking chair down from the maternity ward. I called Judi and told her what happened and in a few hours she was on her way to NC to be with us and she was calling some of the members. My family got there and we took turns holding him, even my little nieces and nephews wanted to hold him. They were confused but not scared and I’m glad they got to say good-bye. We had to take Shane to the deserted x-ray waiting room to hold him because they needed to empty the crash room. We held him for hours and took pictures and cried and cried. We told him it was ok to go to heaven about 10 times before it felt like he left. He didn’t want to leave us and it broke my heart to tell him to go. I just couldn’t comprehend that I would never get to hold him again. I never wanted to hand him back to the hospital.

 

Judi and more of our family arrived at our house that night and the next day Tara Hall, one of our members and a dear friend, drove down from Ohio to be with us. I e-mailed the Listserv that night and the next morning we called more family and friends and had to tell Shane’s home health nurse, Delores, who had been with him for 5 years and next to Jeremy and I, the closest person to him. Thankfully her husband answered the phone, because I just couldn’t bear to tell her. Everyone at the house was trying to help us make arrangements and make more phone calls. I kept myself busy by making the funeral programs- I couldn’t sit and think about what happened because I knew if I started crying I couldn’t make sure everything was done the way we wanted. It was the last thing we would be able to do for Shane, I wanted to remember it and not be in the tearful fog I’d fall into if I let myself cry. Now I know that postponing grief was a horrible decision, but it was the only decision I could make at the time that would allow me to survive those first few days and weeks.

 

We decided to bury Shane in Virginia, at my parents’ house in an small orchard. We had moved to NC to bring him home from the hospital, now we wanted him in Virginia where he should have come home. The funeral director did a great job and found a white casket with cherubs on it and even took handprints and footprints for us. Shane was laid to rest in a Sesame Street outfit, his sneakers, wearing his favorite baseball cap and his glasses and holding his baby and surrounded by his favorite toys. We had a viewing the night before the funeral and we asked everyone not to whisper, but to talk loud enough for Shane to hear them from heaven. The funeral service was beautiful and the programs were Sesame Street themed and the church was literally overflowing with CHERUBS’ members, Shane’s nurses, family, and friends. People we hadn’t seen in 10 or more years came to say goodbye to a little boy they never even got to meet during his short 6 and a half years on Earth. One of Shane’s Godmothers, Rachel, who was his primary nurse during those first 10 months, wore a bright fuchsia and yellow dress to the funeral- she knew Shane would have loved that dress. I wish I had thought of telling everyone to dress in bright colors. During the service Judi read a letter and a beautiful poem written by Jennifer Wasik, another member and dear friend. My sister and her husband read letters to Shane that Jeremy and I had written, Shane’s uncle, James, sang “The Dance” (a song we had sung to Shane since the day he was born) and Shane’s uncle, David, read a very touching eulogy. At the graveside we released 6 Elmo balloons for every year he spent here and 100 blue, red, and yellow balloons for every year he should have spent here. It was raining that day but it stopped just as the funeral started and the clouds actually parted over the cemetery. We had a Sesame Street cake at the wake (the wake was after the burial). It was not a typical funeral, but he was not a typical kid. We wanted to celebrate his life.

 

After everyone had left after the wake I was outside in my parent’s yard and pollen from a tree I had never noticed before and never remembered having pollen starting falling and blowing around like snow. The pollen was just the shape and size of little feathers from the wings of cherubs. It blew around me like a scene from a Christmas movie and I was very peaceful at that moment. Maybe it wasn’t pollen. Maybe it was Shane letting us know he had reached heaven and was now with the other cherubs.

 

His headstone has pictures of Elmo, Big Bird, a truck (he loved his dad’s truck), and one of the logos I had drawn for CHERUBS web site- a cherub wearing suspenders and glasses (one I had created to look like Shane). How do you fit an entire, even though short, life on a stone? We wrote a few words about Shane on it, his name, the dates, and also carved on the stone is “Psalms 18:10”

 

We had a memorial service in NC the following week and more members of CHERUBS came, including Susie and Jim from SC and our dear, dear friend, Rhonda, who was with us in the very beginning when our sons were hospital roommates so many years ago. One of our members, Beth, had even come to visit Shane when he was in the hospital. I don’t believe there could ever be a better group of people like we have in CHERUBS.

 

We miss him so much. I can’t believe this isn’t just a bad dream. I hear him and see him all the time through memories. Sometimes I expect to see him walk through the door, dragging toys into the living room and smiling at me. Shane was such a happy kid. He was always smiling and laughing and even though he was stubborn he had the best temperament and sense of humor. Looking back on that day in the car, I believe he knew it was his time to go and he wanted to make sure he remembered what we looked like. I used to joke that he was psychic because we always understood him, even before he had a means of communication. Now we believe he was just a very spiritual kid with the soul of an old man. His eyes were much too old to belong to a 6-year-old.

 

We take each day at a time and are thankful for all the time we had with him. We know that even though we didn’t have him as long as parents of healthy kids have them, we had him longer than a lot of other parents have their children, and even though his life was hard it was a good, happy life and we wouldn’t change a single second of it or have traded for him any healthy child. I sleep with the “baby doll” he had when he died (we buried him with one of the other 12 that he owned- they kept multiplying over the years). Holding that doll makes me feel closer to Shane. Shane will forever be our hero and in our hearts. The picture you saw at the beginning of this story is of me and Shane telling Jeremy “Happy Father’s Day” (there was a sign, but I had to crop it out). It was one of the last ones we have of Shane and it is the last one of him before he got sick. During his last week we had planned on taking him to get professional pictures taken, but we kept procrastinating. We regret that so much now.

 

Other than losing Shane and letting him go, writing an e-mail to tell the on-line members what happened was one of the hardest things I have ever done, next to writing this story. I know that Shane’s story will scare so many of you, but please know that Shane was atypical his entire life. I don’t know what to tell new families that call who ask “Was your child a survivor?”. Now we know both sides- life as parents of a survivor and life as parents without their child. I hope that something good will come out of this and it will make me a better President for CHERUBS. Like I’ve said for years “You can’t compare one CDH child to another”- that holds very true in this instance. We’d already had 2 families quit because what happened scared them so much, but what happened to Shane was a 1 in a million complication. I don’t want anything else horrible to come from Shane’s death, his death was horrible enough. I especially don’t want families leaving the support of CHERUBS. If any of you have questions or worries about your own child because of reading Shane’s story, please get in touch with me and I will be glad to talk to you about it.

 

Updated 2021:

 

Over 20 years after Shane’s death and I am still running the charity, now called “CDH International”.  Rhonda is now on the Board of Directors with me and, along with many other incredible parents, grandparents and adult survivors, we have grown the charity to over 6500 families in 74 countries.

 

I continue to run the CDH Patient Registry and now I speak at medical conferences.  Sometimes I share our research, sometimes I am speak as a patient advocate or inspirational speaker.   I am a paid public speaker and also a full-time employee at the charity.   I travel months out of every year around the world, raising awareness and pushing research.  We work with NIH, the WHO and I am on several committees at different organizations.

 

In 2020, we registered the charity in 5 more countries; the United Kingdom, Netherlands, Switzerland, Hong Kong and Singapore.

 

The woman so timid to speak up to Shane’s doctors, now speaks at their conferences.  I am the voice of patients born with Congenital Diaphragmatic Hernia.  Not just Shane’s advocate or even CDH International’s advocate… I put myself out there every day to speak up so that all of these children will get a chance to live.

 

I once wanted to be a doctor.   That didn’t happen.  CDH completely sidetracked my entire life.   But now, I work in the medical world and I can say all the things that the surgeons cannot.   I can speak without restraint or allegiance or personal monetary loss or benefit.   There are no politics in my way and though I am still occasionally told to mind my place… I still fight just as hard as I did to get my son home.

 

I never had more children of my own.  It just wasn’t in the cards for me.   Instead, I have over 6500 children.

 

I believe all of it was for a reason.   Shane’s life.  His death.  Now, my life.  

 

We took obstacles, and then a tragedy and made them into something good.  At all costs.  Because someone had to.  

 

You can learn more about the charity at http://www.cdhi.org

The very raw sharing of my son's story a few years ago: