The Real Adventure Begins

(Psst! Kathy here. Long time readers my recognize Neil Rubenstein from his occasional guest posts here at Bliss Habits. I’m just delighted he has decided join us for the next 13 weeks with a Father’s take on the Habits. Please enjoy.)

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Adventure – an unusual and exciting experience or activity that is sometimes dangerous.

I grew up in the suburbs of Chicago in a squarely middle class household. Other than needing my knee reconstructed at the ripe old age of 13, I had a relatively unadventurous childhood.

Things got a little more exciting in college especially having the opportunity to spend 3 weeks in China and again in graduate school when I had the opportunity to go to Paris.

But when I proposed to my now wife in Paris back in 2001, I fully anticipated the real adventure to begin.

I then pulled my seat belt a little tighter, when we decided to have kids. However, like most things in life, it wasn’t that simple. We decided to go through fertility because my wife has a rare genetic disorder called neurofibromatosis (NF). Although it wasn’t very debilitating for my wife causing mostly severe, long lasting migraines, we knew that our children had a 50% chance of having NF and that it could potentially be much worse. We found out that reproductive endocrinologists could facilitate the testing of the embryos to determine the likelihood of having NF…pretty amazing for a rare disease. So after about 5 years and thousands and thousands of dollars (the genetic testing was not covered by insurance), we still weren’t able to get pregnant. At this point, we were running out of insurance (especially for the specialty drugs that we needed), so we decided to take a break. This part our adventure wasn’t so exciting, and it was incredibly stressful.

We needed some time to just decompress. We were only married for a couple years when we started this process. So from around year 2 to 7 or so, we were putting an incredible amount of pressure on ourselves to get pregnant.

As to be expected, when we stopped stressing out over getting pregnant, my wife got pregnant. I couldn’t pull my seat belt much tighter, so I put on a helmet for this part of our adventure. However, we nearly got into an accident when we found out at 37 weeks that our son was going to be born with a severe, potentially life-threatening birth defect called congenital diaphragmatic hernia (CDH).

Aidan & Brody at birth

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. There is only a 50% survival rate for babies born with this birth defect.

After a relatively short 1 month stay in the NICU, our son was able to come home. We had our share of ups and downs, but my wife and I consider ourselves lucky and blessed that were able to bring one of the 800 CDH survivors home in 2010 (in the US).

I pretty much just closed my eyes (3 years later) for the next part of our adventure when we found out at 20 weeks that our 2nd son was also going to have CDH. Typically, the chance of having a child with CDH is .04% and it goes up to 2% after you have one. But we were now about to have our 2nd child with this life-threatening birth defect that is so much more than a hernia. The hernia can be fixed with surgery, but that is often the “easy” part.

Aidan v Brody2

My family was twice blessed as our 2nd son still spent a relatively short 2 months in the NICU. He did come home on an NG tube and generally seems to be affected by his CDH more than my first son. But we are lucky and beyond blessed. Life may be a little more complicated and the adventure a little less predictable than we could have ever imagined, but we wouldn’t have it any other way.

 (Look for Neil’s posts every Wednesday here at Bliss Habits.)



Neil Rubenstein has been married since 2003 to his wife, Amy. His CDH survivor (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), 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.

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.
Amy and Neil recently had their second child in September 2013. After spending 2 months in the NICU, Brody came home on an NG tube. Brody will need the same follow-up surgery as his big brother when he is 1 year old. Neil is the former CHERUBS Illinois (and Wisconsin) Rep and Co-Chair of the Parent Advisory Board. Neil recently created Help4CDH Families and is working towards nonprofit status to be able to continue to provide a forum for people affected by CDH to meet and support each other as well as to be able to provide financial support to CDH families in their time of need.

One thought on “The Real Adventure Begins

  1. Ian Hooker says:

    Your story is really very inspiring for the caregivers like me. At times it becomes really very difficult to provide the care to your loved ones, as we as supporting them financially. This is the reason my colleague suggested I look for Mutual of Omaha supplement ( )for my mother as she is not in good health conditions. I have learned a lot form your story and I will make sure to patient like you while providing care to my mother.

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