My son Aaron was born on July 6, 1999 with Congenital diaphragmatic hernia.

Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year).  The cause of CDH is not yet known.  The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale.  CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity.  This inhibits lung growth.  

Every patient diagnosed with CDH is different.  Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available.  There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.

Roughly 50% of babies born with CDH do not survive.   Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems.  A few of the survivors suffer from severe long-term medical issues.

When Aaron was diagnosed at 20 weeks in utero, we were devastated. What we were told in Winston was just the saddest outcome and not to hope for much.
I was so sick, I will never forget that sinking feeling I had and just going to the bathroom and crying. I cried the whole way home and for the next 20 weeks!! I remember feeling so alone and feeling like this was something I did or didn't do.


My friend  Diane looked up CDH on the computer and couldn't find anything until she came across CHERUBS! The information she printed me while so helpful and explained so much more about CDH to me , it was still heartbreaking!
At every doctors visit we begged for more information! Why this happened? And the same answer, we don't know why or the outcome.


The day arrived to deliver Aaron and I was honestly more afraid that day then I was the whole time! I knew as long as he was inside me he was ok but the minute he came out it would just a roller coaster ride. As soon as Aaron was born he was intubated and whisked away. A little later I was shown a picture of him and told there was no time for me to see him, they had to transfer him to Brenner's PICU for ECMO. I was able to leave for about an hour the next morning and go to the other hospital to see him.



Mom seeing Aaron for the first time.



 Aaron struggled through the first days, with Dr P sitting by his bedside. On July 8th the Dr's had decided that surgery had to be the next day. So I signed myself out of the hospital with a fever and BP dangerously low, but I had to be there for Aaron!!  July 9th Aaron had his hernia repair, surgery seemed to last forever but he came through surgery and was fighting so hard! Aaron's Dr said  there was big hole in his diaphragm and his stomach, intestines, and part of the liver was in his chest. Causing his left lung not to grow. His left lung is now hypo-plastic.
 They hard a very hard time attaching the gor-tex patch to the left side as there was nothing there to attach it too.
In the days that followed Aaron coded several times on the vent and was fighting the vent. So the Dr put him on a oscillating ventilator , which seem to help for a few days but then he started desating again. The Dr then pulled us in for that dreaded meeting about what to do next and what was left to try. He told us that he had 1 thing we had to try now but it was in its trial period and had not been approved. Nitric oxide , they didn't know the side affects or anything yet. We talked about it for a few minutes but when your down to the next to the last thing to save your baby, you are willing to try anything! So we gave him the go ahead, however thankfully now he had started it an hour earlier. We weren't upset with him because he knew we would want to try anything to save him. 

The nitric helped until Aaron got sick with a staph infection. The Dr's started gentamicin quickly to treat the staph infection because he was so sick! Which was alittle scary because there are so many horrible side effects from gentaminin. After a very rough few days Aaron started getting better. Finally at a month old we were able to hold our baby .

After 7 days of nitric , and his treatment of antibiotics Aaron was doing better. At around a month and a half old he went from the vents onto C-Pap and responded really well. We were able to be moved to the NICU now.

Our first week in the NICU went well until Aaron aspirated and had to be put back on a vent. We were devastated and scared all at the same time! Going back on the vent felt like he was starting all over. But thankfully he just needed it a few days until his lungs were ok from the fluids.

At alittle over 2 months old, Aaron was still having feeding problems and refluxing issues and the Dr found adhesion's (scar tissue) on his intestines and the Dr decided he needed to remove those as well as put in a Mic-key button and go ahead and remove his appendix. They also did a Nissan Fundoplacation to help with reflux.  So on Sept 30, 1999 Aaron went in for that surgery. He did really well and was back off the vent within a few hours after surgery. However Aaron was on oxygen but we were preparing to take him home with the oxygen.

The next few days we spent learning how to use the oxygen and feeding button. And of course with Aaron trying to pass the car seat test. He wasn't very fond of sitting up like that. Finally Oct. 7th came and we would be taking our baby home!! After 3 months and 1 day. We were so nervous , yet so excited!!



The day we arrived home Aaron started therapy to start working with his muscles and strength. This was very hard to watch, because he would cry from the pain of moving those muscles. He also started feeding therapy, which was immediately a night mare!! Sensory Integration Therapy was also started in the weeks that followed, and that wasn't so great either, as Aaron would stop breathing when touching certain textures.

We spent many,  MANY days at the Dr's office, and a few at the emergency room. In Dec. 1999 Aaron caught pneumonia twice and we ended up in the hospital for a week each time. Those were both really scary because he was so close to being put back on the vent.
Aaron did well for a few months, then June 2000 he became really sick and had green stomach acid coming out of his mic-key button. Our doctor here brought him into his office after hours to check him and to see if he could figure anything out, but at this point , Aaron was getting worse. He spent about 10 minutes evaluating him and told us to take him to Brenner's.  Aaron was having alot of stomach trouble and his body wasn't responding well to formula still. He had refluxed at some point causing pneumonia yet again. We had to treat the pneumonia , getting his feeding figured out and up his reflux meds. After alittle over a week we were able to come home.
 At that point Aaron was also evaluated for plagiocephaly which began from laying on the vent for so long. He was put into a helmet to try and correct it.
(Aaron ended up having to wear the helmet for almost 2 yrs. At that point his skull had closed (Craniosynotosis) and he required a Major surgery to get pressure off of his brain. In Sept.2002 he had a bilateral lambdoid transposition to correct this. )


Those first few yrs was very rough. Aaron never crawled because he did not have the muscle strength. At around 16 months Aaron was able to sit up on his own, Aaron 20 months he started pulling up in the play pin. By the age of 2 Aaron was finally off the oxygen and walking with out help.

              

Winters are still very hard on Aaron. He seems to catch everything coming and going. With some illnesses such as the flu, he has to have oxygen to get through it.

Simple things like writing or coloring Aaron still struggles with as his fine motor skills still aren't where they should be. His gross motor skills are starting to catch up, just this yr he has been able to pedal a bigwheel. To most people that may seem not so important but for Aaron it was a huge breakthrough.

Over the yrs Aaron has been diagnosed with many other problems steming from his CDH. Aaron has scoliosis, Pectus carinatum, and his most recent dx of pulmonary hypertension.

As you can see CDH isn't just a there a baby, fix it and they are better kind of thing. As a good friend once told me "  CDH kids are *never* normal... they don't just get surgery and then move on. It's a life-long condition. Add on the craniosynostosis and other issues.... that's an every day, for the rest of his life, sleep with one eye open kind of deal. It's not a chicken pox, fall of a bike or scrape their knee kind of problem" .

And wow is she right!!!! It really is because you NEVER know whats around the next corner.

Over the last 11 years we have found support though a organization called CHERUBS. This is a GREAT group of people who are all there to help each other and our kids. Not only have they supported and been there for us, we have made life long friends.

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.  CHERUBS is the original CDH non-profit organization founded in 1995 to help families and medical care providers of children born with CDH.   CHERUBS is the world's first, oldest, and largest CDH non-profit organization.  We are truly a grassroots organization - CDH families creating something out of nothing when there were no other CDH group, information and services in 1995.  CHERUBS was created to make sure that no family endures Congenital Diaphragmatic Hernia without support or accurate information.  Our Board of Directors includes CDH parents, grandparents, survivors, nurses, doctors and the world's top CDH researchers. CHERUBS is run solely by volunteers and donations.  At CHERUBS, every CDH family has an opportunity to honor or remember our children while doing good to help others and work together as a CDH community. No other charity in the world has such a respected, educated or experienced group of leaders who care so much about the CDH community.

For more information you can visit http://www.cdhsupport.org/ 

One of the great projects CHERUBS has going is 

 Save the Cherubs

Congenital Diaphragmatic Hernia Awareness Campaign

"  The mission of "Save the Cherubs" is to make Congenital Diaphragmatic Hernia a phrase everyone knows how to say and everyone knows what it means.  By raising awareness, we hope to raise research funds to save these babies - Save the Cherubs."

http://www.savethecherubs.org/

Aaron's Save the Cherubs Campaign photo was on the first CDH Awareness billboard located in Wilkesboro, NC

Aaron with CHERUBS founder Dawn Williamson

Cherubs also has State get togethers, fundraisers, and  families who do different things in honor or memory of their Cherub.

2010 NC Zoo Trip

2010 CHERUBS baby shower in honor of Aaron

Aaron and House Rep. Shirley Randelman

                     

Roller derby in memory of sweet Oz. We met his parents through CHERUBS

 

CHERUBS has been a great resorce for many families including my family and friends :) I am so thankful for them and all of the wonderful families we have met.

Thank you for reading about Aaron, CDH and CHERUBS :)

Aarons 11th Birthday !

Sites you may want to visit

savethecherubs.org

cdhsupport.org/

http://cherubshane.blogspot.com/