Congenital Diaphragmatic Hernia Awareness Month

This photo was taken in 2008. On the 8th anniversary of my son's death. It may look like a strange children's party at the cemetery, but sending balloons to Heaven is all a grieving parent has sometimes.

I'm posting this for Congenital Diaphragmatic Hernia Awareness Month

I don't have school photos or a graduation photo. I don't make posts about my son not picking up his dirty socks off the floor or playing his music too loud. I've never posted a photo of his first baseball game. I've never had such a photo. I will never have such a photo. You won't see me complaining about having a lazy 23-yr-old who won't finish his college classes or get a job. I wish I could have him here to complain about. I even wish I could still complain about how hard it was to have a sick child or spend nights in the hospital. I'd give anything to have to wake up at 2:00 am for a broken feeding pump or to change a diaper. I'd love to stress about another IEP meeting or spend hours a week in physical therapy, occupational therapy, speech therapy and sight therapy. I miss fighting with the insurance company. I'd love to pinch every penny to afford diapers and gas to the hospital because my ex was out of work half the month because Shane was very sick in the hospital. I'd give my life to hear him cry or squeal or play a musical toy for the 10000th time and grate on my last nerve because I'm emotionally and physically exhausted. I can still sing every song put out by Sesame Street from 1993 to 1999. I wish I was tripping on Shane's toys in the floor. I'd love to have his surgeon on speed dial still. I'd even love to have back the guilt that I felt when I complained about all the issues of having a medically fragile child when I knew so many who didn't have their children. That guilt was easier than this. Anything, anything but this. How little did I know then how much I'd miss that life when all I did was complain about how hard it was even though I knew I was blessed. There was no way to comprehend how much I'd miss it. How much I'd miss him. After all these years, I still miss him and need him like I need air to breathe. 

 

All I have are visits to the cemetery. I have just memories of worry and pain and hardship and watching my child struggle his whole life. I don't have my child. CDH did that. 50% of families only have memories. 1000's of families just like mine.

Learn more about CDH at http://www.cherubs.org

Shane's Story - Chaper 4

 Polaroids taken by Shane's nurse upon arrival at the children's hospital.

Our son wasn't put in the Neonatal Intensive Care Unit (NICU) with the other babies because ECMO (still very new in 1993) was handled only in the PICU.   So he was never in a nursery with other children, he was alone (at the delivering hospital) or with the older children since Day 1.   No "normal" baby anything for our little boy.

The first time I walked into the Pediatric Intensive Care Unit (PICU) 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.  The beds were just feet away from each other with only curtains between them and those curtains only drawn for procedures.   Otherwise parents sat in chairs on each side of the beds or cribs, bumping into the parents sitting at the bed of another child next to them.

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 oscillating 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. Caffy* 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.

I wasn't allowed to stay at the hospital with my son, there was no housing for parents.   We were lucky enough to get a room at the local Ronald McDonald House.  It was such a huge blessing to us to be able to get in as rooms weren't always available to families in the PICU or NICU.  Cancer patients always got rooms first as the RMcD House was invented for them.   It was so wonderful to have a place to stay that wasn't expensive like a hotel room.  Parents still have to pay to stay at the House but it's minimal and not required.   I don't know what we would've done without that amazing House.

 

That night we settled in and Jeremy told me that his brother, James, had found out that Jeremy's application for a job at the local lumber yard had been accepted. After four months, Jeremy had a job. It solved some of our money problems but they didn't seem to matter quite so much any more. Our church and other churches who had never met us began to take up collections to help us get by. My faith in humanity was beginning to grow.  I prayed harder than I've ever prayed in my life that night. I prayed for God to watch over Shane and most importantly I gave Shane to God, to do His will, whatever that might be. 

That weekend we started the ritual of getting up, going to the hospital early to be there when the doctors were doing rounds and staying until we were kicked out at the shift change.  Eating dinner and then back to the hospital.  Then back to the Ronald McDonald House to try to sleep.  Pumping breast milk every few hours throughout.  Adrenaline and worry kept us going mostly.

 

(*Not real name)

Shane's Story - Chapter 2

Shane's Story - Chapter 2

(Graphic Warning)

My water broke at 6:00 am.  After waking my husband up and assuring him that no, I didn't have an accident, we got up to go to the hospital 2 weeks before my due date.

Polyhydramnios is a condition where there is too much amniotic fluid.  This dehydrates the mother and indicates a fetal anomaly.  In normal pregnancies, babies swallow this fluid.   In cherubs, some just cannot swallow it (with their stomachs, intestines, etc displaced).   My polyhydramnios was undiagnosed.   No one had thought to measure me so when my water broke, I mean my water REALLY broke.   It wasn't the cute little puddle shown in the movies and on TV.   I soaked the bed mattress, 3 changes of clothes before we left the house, the bathroom floor as I sat on the edge of the tub to shave my legs (hello, I was getting up on a delivery room table but not with hairy legs!  You women understand), the seat of the car and fluid was literally dripping from the stretcher they put me on in the ER to take me to L&D.  Yeah, that's not normal.

I was set to deliver at a small hospital in the county in Virginia where we lived.   It was about an hour from my house or maybe 45 minutes (it was 21 years ago).   There was no specialist, no NICU, the L&D unit had only 4 beds which probably only filled during a full moon.  It was one of only 2 options of nearby hospitals and it was where my sister had given birth 2 years earlier.   They didn't drop my nephew so I figured it was an ok hospital.  I was 19, what the heck did I know?

We got to the hospital by 7:30 am, 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.

13 hours I was in labor, which is pretty average.   I don't remember much about it honestly except that I was STARVING and there was a Burger King across the street from my hospital bed.  Other than that I remember climbing up my tilted bed to the top of it during a contraction and passing out and sliding down until the next one.   Giving birth is exhausting.  From 9:00 a.m. to 4:00 p.m., they remained bearable and I only dilated 1 cm.   At 6:00 I started to beg for pain killers. I was given 2 shots of Demerol and at 6:30, I had an epidural.  Too little, too late.  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?".

You know those books and movies about out of body experiences?   I could hear myself screaming but it was like I was listening to someone else.  I was in the nightmare I had had every night for 9 months.  The room was the same bland hospital room, the bed the same.  I was alone.  I was screaming.

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.  20 stitches so he was there a long time not answering me!  I was starting to yell that I was going to get up off that delivery table and hunt my baby down.   Literally as I was pulling myself up off the table, the nurse came in with the pediatrician.   It was my anesthesiologist who figured out what was wrong with my son, not my OB or the pediatrician.   There was no pediatrician in the hospital at 7:00 pm to rush in to help my baby so the anesthesiologist took care of him until the pediatrician got there.   By this time they had been gone so long they had done x-rays and bagged him (CPR mask hooked to oxygen shoving air into his lungs by hand pressure) for probably 30 to 45 minutes, maybe over an hour.   This is not something a CDH baby is very fond of to put it mildly.

The pediatrician held up the x-ray in front of Jeremy and me and said coldly, 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. I sent for the helicopter.  You need to tell him good-bye because he probably won't live to be transported" and he walked out of the room.

January 28, 1993 - my CDH Awareness Day.

I wish I had some cute delivery photos of a proud mom and dad and disgustingly un-washed newborn swaddled in my arms, but I don't.

Shane's Story - Chapter 1

For CDH Awareness Month I've decided that I will share Shane's story through photos every day.  Or will try to.  Hard to wrap it all up in 30 nice neat little packages.

This is me at my baby shower, about 2 weeks before Shane was born back home in Virginia.  That's his dad.  No, I don't know what's up with that beard.  We were young, stupid, in love, newlyweds of a year and a half and not even old enough to buy beer yet.   It was 23 years ago - not uncommon to marry young then.  I don't recommend it.   Shane came along before I started college... UNC Chapel Hill med school was my goal.   Ironic that we would eventually end up there with Shane.  These pictures are bad but they are all I have.   Maternity photos were not in back then.

I was determined to have a healthy baby.  I read all the books.  I ate well except for constantly craving dill pickles and orange sherbet (not at the same time).   I wouldn't use the microwave or the remote control I was so paranoid.  No smoking, drinking, drugs (except for prescription antibiotics for that infection).  We lived in the middle of farm community, I might have been exposed to pesticides.  I don't know.  Not that that's proven to cause CDH.   My point is... I wasn't doing anything at all to "deserve" a sick baby (like any baby deserves to be sick).

I had a good pregnancy overall with no real morning sickness, just a bladder infection the first trimester and bleeding.  A threatened miscarriage that scared the heck out of us for a few days but he held on.  I had had 2 very early miscarriages before this pregnancy and didn't want to go through that again.  After the bleeding stopped and we got a heartbeat on ultrasound, things seemed ok.

The 3rd trimester I was hospitalized for dehydration and what we thought was the flu.   I had severe, undiagnosed polyhydramnios (too much amniotic fluid, indicating a problem with the baby). 

I had 2 ultrasounds, one at 7.5 months.   The doctor wrote down on my records (that I requested later) on the ultrasound check list "Cannot find stomach".  They never told me this, never did another test, never sent me to a specialist.  Nothing.  They diagnosed nothing.

This was before we had ever heard of "Congenital Diaphragmatic Hernia". 

I dreamt every single night that something was wrong with my son.  I knew he was a boy even though we didn't want to know the gender.  I dreamed that he was born, turned blue, didn't cry, the doctors grabbed him and took him off to another room and I was left alone on the delivery table screaming "Where is my son?!  What is wrong with my son?!" and woke up crying every single morning.

I told this to my OB multiple times and was dismissed as a "nervous first-timer".

Why are there 2 "CDH Awareness Days"?

(WARNING... a bit of drama... ignore if you're dealing with enough CDH drama right now)
We are getting asked that question a lot today and we try to ignore it politely to avoid any drama but there's a lot of misinformation going around so here are the facts:

There was once one CDH charity (ours). 1 person was banned about 10 years ago. She started her own splinter charity.

They trademarked "Congenital Diaphragmatic Hernia Awareness" and "Congenital Diaphragmatic Hernia Awareness Day"

Other groups and charities formed (several with our help). Together we fought the trademark - 8 charities and many surgeons, along with 4000 others - and after 2 YEARS and lots of drama, we won. We had to fight as every time we said "Congenital Diaphragmatic Hernia Awareness" without 1 person's permission, we were threatened with a lawsuit. Yes, it was ridiculous. Yes, it's highly embarrassing to the whole community. But instead of rolling over and giving up raising awareness (which we had done for 10 years already), we fought. For our babies, we had to stand up and fight and say, "No, you will not restrict anyone from raising CDH Awareness". Court documents here (including the lawsuit threats, the ribbon, etc) -
http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2

Pretty sad, isn't it? BUT, there is a happy ending.

On April 19, 2010 the trademark on "Congenital Diaphragmatic Hernia Awareness" was removed. That is why that day is the International Day of Congenital Diaphragmatic Hernia Awareness. It's a celebration and a remembrance that CDH Awareness belongs to everyone. We fought very, very hard so that YOU, me, all of us and every charity and family could raise CDH Awareness freely without the threat of being sued and without being restricted by 1 person/charity.

There is still a trademark on "Congenital Diaphragmatic Hernia Awareness DAY" so we do not use that phrase or we could be sued. http://tsdr.uspto.gov/#caseNumber=77640674&caseType=SERIAL_NO&searchType=statusSearch We didn't fight it to avoid more drama and division in the community. Our charity CANNOT participate in that day or we will be sued. History has shown us that.

Yes, the other group did "pick a day first" - March 31st (the day they filed to be a charity - also the same day they filed to try to shut us down but that's another story). But when you don't let all CDH families and charities participate, how is that a day for the whole community? And when you threaten others who try to raise awareness how is that not splintering the community? Starting a "charity" out of spite is splintering already. 1 person and 1 tiny group should not dictate who can and cannot raise awareness for something that has devastated all of our children and families and when and where we can raise it. So most of us decided to avoid that drama and we chose a new day - April 19th because it's not a charity day, it's the day 8 charities and 1000's of families won their freedom to raise awareness for CDH again. The ribbon was voted on by all these groups and families. We chose something different and not used by any other cause and not about 1 group or 1 child. Pink, yellow and blue for babies, clouds for hope. This won out over about a dozen ribbon designs. April 19th and the ribbon are owned by NO ONE. No trademarks, no copyrights. Anyone can use the ribbon, anyone can join in. It belongs to ALL of us.

Let me also say that our charity never spent 1 penny of donations on lawyers, etc. - all services were donated to us pro-bono. And we didn't "sue" anyone - we contested the trademark. We did this after repeatedly asking that group to remove the trademark and work together and being denied the right to raise awareness.

It's not that we don't want to work with others or want to compete. It's because our hands are tied. Why risk being sued or going through another trademark suit when we can celebrate a day that's free to everyone? We chose the no-drama, no-lawsuits, no-trademark, only goodness and celebration day of April 19th.

Since then, several new groups have popped up. A few charities have created their own days based on their founding day. Some have chosen their favorite colors to represent them. Facebook pages and groups pop up all the time with 1 child's birthstone as the "CDH Awareness Ribbon" color or their day as "CDH Awareness Day". What can we do? Yes, any awareness is great! But how many other causes have multiple ribbons and days?

Everyone talks about "working together to raise awareness" but so many want their own days/ribbons/etc.... nothing we can do.   There have been many pages / groups to pop up to even try to capitalize on this drama and label themselves the "No drama charity" - while trashing other charities, splintering the community more and you guessed it - their own color, day, etc and tons of photos of their kids.  They chastise us and the other charity as if our charity has any power here at all to force people to work together.  We stood up so THEY could freely raise CDH Awareness, helped their families and in many instances they took OUR member lists and services to start their own "charities".  No good deed goes unpunished, eh?  

All of this... splinter groups, trademarks, drama... all of it selfish and egotistical and all about "Watch me, I can do it better!  Pay attention to me!  You don't give ME what I want, I will start MY own charity to get it!  My family has suffered more than any other CDH family in history - we MUST be honored!".   It should be "Help these children!  See them, see what CDH is doing to them?!  Help THEM!  All of THEM!".   That's what it should be.  :(  

Working together means wanted to help as a community.   Not trying to compete or reinvent the wheel but seeing what is already there and trying to build on it.  10 years ago, we had that.  Before the trademark we had 9 charities - 8 fought the trademark together.  That is community.   Facebook changed all that and egos have become more important than the community.  That's just a sad fact and one we have no control to fix. 

We wish everyone would work together instead of so much division but we can't force them. Maybe one day we can all work together and sing at the same time and be louder. But to do that, everyone has to give up wanting to have a solo performance and work together. Saying all this frequently makes us a target and some would rather compete and trash us than admit their motives a bit self-motivated. But when you stand up for what's right it's never easy!

Members of the Alliance of Congenital Diaphragmatic Hernia Organizations - ACDHO-... don't just talk the talk... they walk the walk. We work together. Grassroots charities, positive motives, no splinter groups, no egos, no drama, no competition. 1 ribbon, 1 day, 1 united CDH community.

We NEVER tell our members what day(s) to raise CDH Awareness or what groups to join or not join. Our volunteers - yes, to protect our charity. Families - no. Go raise awareness every day of the year! Join every group, page, charity, fan club, etc! Do not choose sides. Do not bash anyone.

CDH isn't about 1 group or 1 day or 1 person or 1 ribbon. It's about these children who are fighting to breathe and to live every single day. It's about you families struggling to get through each day. The cause and working together should always come first. Here, it does.

So there it is. If you want to respond, ok. But please do not bash anyone. Not our charity, not theirs, not any person. Be courteous, factual and kind. Remember the rules of this group.

BTW, this post is written by just me, it's not an "official" charity post by the Boards. It's just this one CDH mom and charity leader.