The Cohen family is looking for a miracle as their 6-week-old daughter Madison waits on a donor list to receive a new heart.
Madison was diagnosed by doctors with a congenital heart disease known as Hypoplastic Right Heart Syndrome. Her parents, Stephanie and Matthew Cohen, actually found out something was wrong at the baby’s 20-week ultrasound.
“During the appointment, we found out that she was a girl, and we were on a super high,” said Stephanie Cohen, 31. “We were so excited and went to the waiting room to start telling people that she was a girl. Then I [was called into the doctor’s office] and she looked as if she was going to cry. She told us something had showed up on the ultra sound and we were all crying. We were shocked, so surprised, and devastated … I thought it was going to be the happiest day of my life and it ended up being the worst.”
Madison underwent her first heart surgery at 12 days old on June 29, and had seemed to be recovering well in the hospital. But her condition worsened.
“She did really well from the first surgery and she recovered that first week after the surgery really quickly,” said Cohen in a phone interview last week. “She was off all breathing assistance and she was really stable and we actually thought that maybe she would be going home soon…and then they started to see a decrease in her heart function on the left side…that had been working properly. The [doctors] decided she was at risk for sudden death and [decided] to go the heart transplant route.”
As of July 15, she has been placed on the waiting list for a donor heart.
Stephanie Cohen’s sister Tiffany set up a GoFundMe page when they discovered Madison would need a heart transplant and insurance wouldn’t cover it all.
“I just received my first bill for $13,000,” said Cohen, who still has to review it.
“Complete strangers have reached out to me and it’s been amazing the support we have received.” – Stephanie Cohen
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According to Cohen, any funds Madison doesn’t need will be donated to Morgan Stanley Children’s Hospital at New York Presbyterian, where Madison is awaiting a heart, as well as to various organizations researching congenital heart disease, and to other families in need who have GoFundMe pages.
Cohen said the “GoFundMe is great and so overwhelming.”
But monetary support is not all that the family has received.
“I also joined a Hoboken mommy group during pregnancy, and they have been amazingly supportive,” said Cohen, who has lived with Matthew in Hoboken for five years. “So many moms have reached out to me for support. They created a meal train for us and bring meals to our home, and complete strangers have reached out to me and it’s been amazing the support we have received from community.”
Fundraising event
Local Barre is hosting a fundraiser on Wednesday, Aug. 3 at 7p.m., a fitness class whose proceeds which will go to Madison’s care. The class will be held outside at Maxwell Place Park on Sinatra Drive North. Participants can donate any amount and can either sign up before the event online and donate or arrive with a donation in hand.
“I was the director of client relations at Local Barre for the past year and a half, and the management team and the owner decided to throw the fundraising donation class outside so the capacity could be unlimited,” said Cohen. “They really wanted to see the town come together in the community…they wanted to host that event to get donations and they’ve been with me through it all, and crying with me and helping me get through this. They’ve been so supportive.”
The Cohen family remains positive through this trying time through the support of their coworkers, family, friends, and complete strangers.
Other stories from transplant patients have allowed Stephanie to remain positive.
“I’ve met a mom whose little girl is three years old who had a transplant and now she’s doing well,” said Cohen. “To see her doing well gives us hope and strength that even though we can’t see the end in sight right now… once she does have her heart transplant and recovers, we will be able to bring her home and she will live a completely normal life and be a normal girl.”
To donate to the Madison’s GoFundMe page, go to www.gofundme.com/2fh63ng
To register for the fitness class fundraiser go to https://clients.mindbodyonline.com/classic/home?studioid=6470