How CDH defined flexibility for me

Just thrilled to have Neil Rubenstein back with us today. Longtime Bliss Habits fans may remember his moving account, Never Lose Infinite Hope – A Father’s Tale during a previous HOPE week. This week you will learn how FLEXIBILITY also makes a difference when caring for a critically ill child.

Flexibility – The ability to adapt and generate creative options rather than to obsess, worry and control.

What does flexibility mean to you?

As a kid, I used to think of flexibility in more simple terms such as the ability to stretch before running a race.  However, as the years went by, my own thinking became more aligned with the definition above.  Going to grad school, getting married, tearing a tendon in my bicep, getting laid off, and getting fired all played a role in how I defined flexibility and in turn learned to deal with the need for it.

 

However, nothing compares to finding out your unborn child only has a 50% chance of survival due to a birth defect that you’ve never heard of.  Yes, you read that right.  Now I think it’s pretty safe to say that most people do what they can to control as much of their pregnancy and delivery as possible.  You see your OB numerous times, pre-register with the hospital you are planning to deliver at, and some people even pre-pack their bags and plan out a route to drive to the hospital.  You do what you can do control the situation given much of it is out of your control.  It is understood that you have to be somewhat flexible during pregnancy but most people try to minimize how flexible they really need to be.

 

At 37 weeks pregnant, my wife and I had to put our ability to remain flexible to the ultimate test.  It was at this point, that we saw a high-risk OB for a level 2 ultrasound.  My wife’s amniotic fluid level had been elevated since 35 weeks, so her doctor decided it was time for a level 2 ultrasound.  She wanted to give us peace of mind that everything was okay with our unborn son.  Unfortunately, everything was not okay.  The doctor diagnosed our son as having a birth defect called congenital diaphragmatic hernia (CDH).  CDH affects 1 in every 2500 pregnancies or 1600 children per year in the US.  She also told us the there was only a 50% survival rate.

 

Everything just changed….we couldn’t deliver at our scheduled hospital and my wife’s regular OB could not be the one to deliver our son any longer.  We went from cruising through our pregnancy to being unable to even tell our family what the doctor had just diagnosed.  We went from anticipating bringing our son home a couple days after birth to not knowing if we’d ever bring him home.  We went from expecting the doctor to say upon delivery, “it’s a beautiful baby boy” to not knowing if our son would even have the lung capacity to cry upon being born.

 

CDH occurs when the diaphragm fails to fully form while the baby is still in the womb.  When this happens, the organs from the abdomen float into the chest causing stress on the lungs.  The additional organs that float into the chest cause the lungs not to develop properly.  CDH can also cause heart issues along with a host of other things.  Basically, when one organ doesn’t develop properly at this crucial stage of the baby’s development it can snowball into a lot of other complications.   The diaphragm forms at around 7-10 weeks of gestation.

 

New plan – We had three weeks (at most) to find a new hospital to deliver at, determine where we wanted our son to be cared for after delivery, and then set up appointments to tour the respective hospitals to give ourselves some level of comfort that we were making the right decisions.

 

When meeting the woman would be become our miracle worker and son’s surgeon, she said something that will stick with me for the rest of my life.  I had never thought about flexibility from a doctor’s perspective.  During our initial consultation a few days after the CDH diagnosis, she told us that there is really no definitive way to determine how sick our son will be when he is born.  There are a number of tests and ratios, but in reality “he will tell us what we need to do when he is born in order to stabilize him.  We will let your son tell us what we need to do…”   Flexibility

 

When would our son’s repair be to fix his diaphragmatic hernia?  No idea.  How long would he be in the hospital?  No clue.  What abdominal organs had travelled into our son’s chest?  Not really sure.  It looked like his stomach and some of his intestines.  The level 2 ultrasounds did show that our son’s heart had been pushed to the wrong side of his body by his stomach (relatively common among babies with CDH).  What was the game plan for our son once born?  Hard to say.  However, the number one goal would be to stabilize him enough to be transported to the hospital where his care and (hopefully) surgery would take place.  The rest would have to be played by ear. 

 

Scary!  Not only did we not know what was going to happen after our son was born but neither did the doctors.  They had a general idea, but that was it.  Talk about the need to remain flexible.  My wife would be delivering via c-section in one hospital and my son would ultimately be transported, stabilized and cared for in another.  Me – traveling between the two hospitals to try to be my son’s advocate and keep my wife informed regarding our son’s progress or lack-of.  Flexibility

 

Now imagine having to uproot your family, take a leave of absence from your job, and live in a hotel or Ronald McDonald house for an indefinite period of time.  We are lucky that Chicago has multiple hospitals that can handle CDH cases and that they are all within a reasonable driving distance for us.

 

But many families decide to travel to another city or country (for that matter) to try to get their child the best care possible.  Our son was only in the hospital for 29 days (even though it turns out he had no diaphragm at all), but imagine your child having to be in intensive care for 3, 4, 5 months or even more than a year.  There is no normal when it comes to CDH.  My son had an extremely severe defect and survived.  Sometimes the child has what would be considered a minor defect (a small hole in the diaphragm) but after a lengthy hospital stay does not make it.

 

Flexibility – The ability to adapt and generate creative options rather than to obsess, worry and control.

 

I don’t know about mitigating worry by being flexible but if having a child with a birth defect such as CDH doesn’t test your ability to adapt and to accept that you cannot control the situation, I don’t know what does.

 

 

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Neil Rubenstein has been married since 2003 to his wife, Amy. He has two CDH survivors. Aidan was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), and his heart had been pushed to the left side by his stomach. Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen.

His second CDH survivor was born in September 2013. Brody was diagnosed at 20 weeks and ended up spending almost 2 months in the NICU. Brody had his hernia repair at 3 days old. The same surgeon found all of Brody’s organs in his chest except for his stomach and liver. Brody had a partial diaphragm and needed a Gortex patch to close up the hernia. Brody finally came home on an NG tube. Brody will need the same follow-up surgery as his brother when he’s around 12 months old.

While Neil and (his wife) Amy were still dating, they started Creative Celebrations, a children party planning and entertainment company. Neil has over 15 years experience in Integrated Marketing Communications and is currently looking for his next permanent role in the Chicago area.
Neil is the former CHERUBS Illinois and Wisconsin Rep. Neil is currently planning a Midwest CDH get-together (https://www.facebook.com/events/1422319488014152/) on April 19 as the first official event of his newly formed group Help4CDH Families (https://www.facebook.com/HelpforCDH). Neil is working towards non-profit status, so he can begin providing services to the CDH community.