Never Lose Infinite Hope – A Father’s Tale

I met Neil during the Blogversary-apolooza here, when he entered the Bliss Habits’ contest to win $100 for his charity. CHERUBS was not the winner that time out* but I was impressed with his compassion, resolve and hope so I asked if he would like to share his story here, to raise awareness and to show us all the power of hope.

 

Hope:  the feeling that what is wanted can be had or that events will turn out for the best.

What does hope mean to you?  How does it affect your everyday life?  I can tell you that to me, it used to only impact my life in mundane ways.  I hope I get a good grade.  I hope I get into my college of choice.  I hope I can find a job after graduate school.  I hope I don’t get laid off.

That all changed on May 24, 2010.

That was the day that my wife and I were scheduled to have a Level 2 ultrasound to hopefully find out why her amniotic fluid was so elevated so late in her pregnancy (at this point we were at 37 weeks).  We found out (after the technician ran out the room to get the doctor)….and I quote, “well you son’s stomach is here where his heart is supposed to be and his heart is on the wrong side of his body.  This birth defect is called congenital diaphragmatic hernia or CDH, and I’m sorry to say there is only a 50% survival rate.  Please collect yourselves and meet me in my office when you are ready.”  And then she walked out.

I remember thinking what just happened as my wife completely lost it.

I had no idea what CDH was…and it had only a 50% survival rate??

“We must accept finite disappointment, but never lose infinite hope.”  Martin Luther King, Jr.

That quote about sums it up.   We were devastated.  We were having a picture perfect pregnancy.  How could this happen?   Hoping for anything less than the survival of our son seemed meaningless at this point.  But first we had to get through the next three weeks (if we made it that far).  I started to research CDH, and I can honestly say that what I found almost caused me to “lose infinite hope”.

What is CDH?  CDH occurs when the diaphragm fails to develop properly leaving a hole in the muscle.  When this happens abdominal organs slip through the hole in the diaphragm into the chest causing stress on the lungs at the very least.  It is common for CDH babies to have heart problems along with a host of other abnormalities.   CDH occurs in one in every 2500 births in the US which totals 1600 per year.  However, there are over 50,000 diagnoses per year if you consider the entire world.  On average only 50% survive.  CDH is as common as Spina Bifida and Cystic Fibrosis but very few people have ever heard of it until it affects them directly.  Unfortunately, I also learned that very little research is currently being conducted to find the cause of this life threatening birth defect.  None of this did much to strengthen my faith and hope that my son would survive.

Then I found the organization CHERUBS (www.cherubs-cdh.org).  This is the first and largest organization devoted to raising awareness of CDH, providing support to affected families, and encouraging research of this birth defect.  Knowing I wasn’t alone definitely made us feel a little better.  But the reality was I didn’t even have time to officially join the group as my wife could go into labor at any minute…and we still had to change doctors, find a new hospital to deliver at, and determine where we wanted our son to ultimately be cared for and hopefully have his hernia repair (if he honestly even survived that long).

How do you not lose your faith when you have 3 weeks or more to hope that your child will be strong enough to survive when born?

“I find hope in the darkest of days, and focus in the brightest. I do not judge the universe.” Dalai Lama

How do you not “lose infinite hope”?  You just don’t…hope was all we had.  I did everything in my power to control what I could…but in the end I had to hope, pray, and have faith that I made the right choices for where my son would be delivered and where his care would ultimately take place.

Fast forward 2 years later…my son just turned 2 this past Father’s Day.  He is really a miracle…especially since we learned from his surgeon after she repaired his diaphragmatic hernia that he didn’t have a hole in his diaphragm…he didn’t have a diaphragm at all.  He is a miracle to us and hope didn’t fail us, but technically (of the 4 CDH babies born on his birth date back in 2010 in the US) he and one other baby survived.  The other 2 unfortunately didn’t make it.

What do I hope for now?  Sure a stable job and medical insurance are important and always nice.  Especially given that fact that as soon as you get complacent or think you are past all the potential CDH hurdles, CDH rears its ugly head again sending you back to the ER.  CDH will always be a part of our lives.  We will always have to worry about a potential reherniation among many other potential long-term complications.

But what do I really hope for now?  Well since this past week was a particularly devastating week for the CDH community losing 6 babies in 2 days (that we know of),

  • I hope that the 2 main CDH research studies (DHREAMS – http://www.cdhgenetics.com/ and CDH Boston Research Study –http://www.massgeneral.org/children/research/researchlab.aspx?id=1486)  can find the cause of CDH.
  • I hope knowing the cause will allow doctors to minimize the frequency of occurrence.
  • I hope that knowing the cause will help improve the care for babies who are still born with CDH, make care more consistent within the US and around the world, and improve the average survival rate to well above 50%.
  •  I hope that the CDH Research Bill (in committee right now) gains enough support to pass, so that finally appropriate research dollars can be allocated towards this horrible, devastating, life-threatening birth defect that really isn’t rare at all (http://www.cherubs-cdh.org/bills/).
  • I hope that CHERUBS continues to get the funding it needs to provide services and support to its more than 4000 members in over 50 countries.
  • And I hope that someday no family will have to hear  “…this birth defect is called congenital diaphragmatic hernia or CDH, and I’m sorry to say there is only a 50% survival rate.”

“We have always held to the hope, the belief, the conviction that there is a better life, a better world, beyond the horizon.” Franklin D. Roosevelt

 

~~~~~~~~~~~~~

Neil author picNeil 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.

11 thoughts on “Never Lose Infinite Hope – A Father’s Tale

  1. Becky Newell says:

    Please vote for cherubs, so we can help all these babies, and maybe try to find a cause, and a way to prevent this horrible birth defect

  2. Neil, I’m not sure there are the words to express what I want to right now. I had my breath taken away as I read…and yet, as I continued to read, it returned deeper and more full than it had been before. That has to be one way that we know hope is present. I send love, caring, and hope to not only your family, but to those who continue to understand why their children received this situation… Thank you for opening to us all and for sharing this.

    • Lisa—thanks for your comments and for taking the time to read my post. I really appreciate it!

      And thanks to everyone else for taking the time to comment and/or read my post. It means a lot to me.

      Neil

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