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.
For more information, go to http://www.cherubs-cdh.org/