Couple pregnant for second time with baby having congenital defect

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Aidan Rubenstein’s energy and personality are big enough to fill a room — a townhouse for that matter — filled corner to corner with love and mementoes of his now 3-year-old life.

His parents, Neil and Amy, happily hover over each of these moments. None of them, they know, were ever guaranteed.

Just three weeks before Aidan’s arrival, their doctor saw ultrasound images of the couple’s son and told them this:

“His stomach is here, his heart is here, it’s a condition called Congenital Diaphramatic Hernia, there’s only a 50 percent chance of survival. Collect yourself and meet me in my office,” Neil recalled the doctor saying.


The Rubensteins lives’ changed forever.

“It was devastating to go 37 weeks in what we thought was a pristine pregnancy, and suddenly find out your child has a 50 percent chance of survival,” he said.

Congenital Diaphramatic Hernia, known as CDH, is a condition so rare it doesn’t register on most expectant parents’ long list of worries about things that could go wrong. One in 4,000 are the odds something like this may occur.

Most often, it means a baby is born with a hole in the diaphragm, allowing the contents of the lower abdomen, like the intestines, to move into the chest, impacting the growth and condition of organs like the heart and lungs.

In a moment that should have been joyful, Neil and Amy braced for the worst.

“I didn’t know what to expect at that point, I didn’t know if he was going to live, going to die, all i know is that i was so very emotional and scared because I could not experience what it was like to be a mom for the first time,” Amy said.

That’s because Aidan was born with no diaphragm at all. Stunned at the severity of his condition, doctors whisked him to neonatal intensive care where he remained for the next month, not be held or even touched by his mom and dad.

At four days old, Aidan underwent surgery to construct a diaphragm out of gortex. That surgery was wildly successful as seen in Aidan’s vibrancy today.

Neil and Amy always wanted to have a family. Their love for children is clear. Their business? Planning birthday parties for kids.

After extensive genetic testing, the couple decided to have another baby.

A few weeks ago, they went for an ultrasound but something on the screen looked off.

“Could it be, could it not be, could it be something else? Obviously we were scared,” Amy said.

Neil and Amy had been in this same position before, in the same room, with the same doctor.

“Instantly, you could see the look on his face, he put his hand on his mouth and tried to really study it,” Amy said.

Twenty weeks into her pregnancy, Amy’s second son was diagnosed with the same condition: CDH.

The chances were infinitesimal. The consequences, enormous.

“Why us, why us again, this isn’t supposed to happen,” Neil said.

“I’m frustrated, I’m angry, I’m emotional. I cry every single day,” Amy said.

Doctors say many parents would choose to terminate a pregnancy this complicated. A look at Aidan tells you why Neil and Amy are not.

“These are the sickest babies, there isn’t a baby in the institution who is sicker,” said Dr. Marleta Reynolds, Surgeon in Chief at Lurie Children’s Hospital.

The staff at Lurie Children’s Hospital has its plan in place for the moments following Amy’s September 13th C-section at neighboring Prentice, where a team of about 15 will assist in the delicate delivery.

“The baby will have a breathing tube placed, the baby will have some IVs placed, the baby will be stabilized, moved across the bridge to our NICU, met by me, my team our neonatology team,” Reynolds said.

This time, Neil and Amy will be facing their fears with more support that they have worked hard to create.

Neil heads the Illinois and Wisconsin chapter of CHERUBS, a small community of CDH-affected families helping each other in a club no one would ever want to have to join.

“We didn’t have anyone to turn to, we didn’t have anyone who knew what we were going through, we didn’t know anyone at all,” he said.

Now not only is Neil the CHERUBS’ leader, he will be the its most experienced member.

“I helped foster this community in Illinois, done my best to get folks involved, know I’m here, know they are not alone, I never thought I would have to tap into it again myself,” Neil said.

Sometimes, Neil says, he wishes he didn’t know now what he didn’t know three years ago.

“Now we have 20 weeks to essentially worry, to stress, to know in the back of our head that no matter what statistics they do, no matter how severe they determine the defect to be, all of it is proxies. They don’t mean anything, at the end of the day, this child has a 50 percent chance of surviving,” Neil said.

They’re playing the odds they were given, looking at the promise of payoff in what is one boisterous blessing.

“I firmly believe we will have another miracle in our life. Aidan was a miracle and so is this baby,” Amy said.

“It’s scary to know 50%…my chances of having a second miracle. Am I going to have another miracle? I hope so,” Neil said.

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  • oregoncdh

    Thank you SO MUCH to WGN & the Rubenstein's for doing this story! It is very hard to get the word out that CDH is not as rare as one might think, that it is as common as Spina Bifida or Cystic Fibrosis, but gets a fraction of the awareness & even less funding. Sadder yet is that every 10 minutes somewhere in the world, a baby is born with CDH, and 1/2 of them will die like our Cherub, not to mention toll it takes on families emotionally & financially.

    Neil & Amy have worked tirelessly to spread the word and SO deserve the best outcome! Families should not have to face this once, much less twice. PLEASE support us to "Help Save the Cherubs!!"

    Shelly Moore
    CHERUBS Oregon Co-Rep

  • Dawn Williamson

    Thank you so much to WGN for running this story on such a wonderful family and bring awareness to Congenital Diaphragmatic Hernia.

    Neil is indeed a very active and valuable volunteer here at our charity, helping many families like his own. We were all devastated to hear the news that he and Amy had to face CDH yet again. We respect their courage in telling their story at such a hard time in order to try to help others.

    Dawn M. Torrence Williamson
    CHERUBS President and Founder

  • Jessica Schmaltz

    On behalf of my family, who we lost our little girl to CDH, we all want to THANK YOU for running this story. Bringing awareness to so many that no so little of this defect, means so much to so many. Thank you again. Looking forward to your follow up story.

  • Tracy Meats

    Thank you WGN for doing this interview with the Rubenstein's! Amy and Neil are an amazing family and it broke my heart they are on this journey with CDH once again. Sharing their story with CDH and their continued journey with CDH is bringing much awareness to a birth defect that needs to be brought to the forefront. More research and awareness is desperately needed, for too many babies die every year to this birth defect. Thank you for sharing the Rubenstein's journey and we all are praying for the best outcome for their new son on the way.

  • K Valles

    My son was born with the same condition, hope all the best for the parents. I can NOT imagine having to go through it a second time. It changes your life forever. As I read this (wish I would have seen the news) It brought back so many memories almost the same exact work from from the doctor. We went through with the pregnancy and now our son just turn 7 yrs old on the 12th of this month. he is the happiest child I know! Thank you WGN for raising awareness!

  • Lisa Coleman

    I too lost a daughter to CDH I thank you WGN for doing this story as welll to the family who shared there story.More women need to know this is out there.Too the family of this story my prayers are with you..Lisa Coleman Columbia S.C.