Courage: strength in the face of pain or grief.

Just honored 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 and How CDH defined flexibility for him. Today he is talking courage, a courage I am blessed not to know.

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Courage is:
Finding out your child is going to be born with a birth defect called congenital diaphragmatic hernia (CDH) with only a 50% chance of survival and deciding to continue with the pregnancy

Courage is:
Finding out your child is going to be born with a birth defect called congenital diaphragmatic hernia (CDH) with only a 50% chance of survival and deciding NOT to continue with the pregnancy

Courage is:
Finding out your child is going to have CDH and waking up the next day

Courage is:
Finding out your child is going to have CDH and having to explain to everyone you know what it even is and that it’s not just a hernia but a life threatening birth defect…over and over and over again.

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Courage is:
Finding out your child is going to have CDH and getting up every day afterwards and forcing a smile on to your face.

Courage is:
Finding out your child is going to have CDH and somehow continuing on with everyday life no matter how mundane it now seems.

Courage is:
Finding out your child is going to have CDH and being forced to make life and death decisions for your unborn child due to a birth defect you had never heard of just days before.

Courage is:
Seeing your child whisked away to the NICU minutes after being born, having no idea what happens next, and somehow finding the strength to hold it together.

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Courage is:
Having to advocate for your child even though you don’t fully understand what’s going on.

Courage is:
Showing up at the hospital every day not knowing if it will be the last one you get to spend with your child.

Courage is:
Continuing to answer questions from family and friends as honestly as possibly but not knowing which 50% your child will fall in.

Courage is:
Answering that phone at 2 am when you know it’s the NICU, and it can only mean a handful of things…all negative.

Courage is:
Having to hold your screaming child down in order to practice inserting an NG tube

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Courage is:
Sitting in the waiting room (again) while your child undergoes another exploratory surgery

Courage is:
After months in the NICU finally getting to bring your baby home only to be struck with the realization that “home” is a tenuous word and the slightest cold could send your child back to the NICU.

Courage is:
After months in the NICU coming to the realization that you won’t get to bring your child home…ever.

Courage is:
Having to plan your child’s funeral.

Courage is:
Deciding to have another child after losing one to CDH

Courage is:
Deciding to have another child after being affected by CDH at all.

Courage is:
Waking up the next day and putting one foot in front of the other.

 

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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.

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