Zohara Miller ZoharaTheWarrior

First post: Jan 12, 2021 Latest post: Feb 2, 2021
Welcome to our CaringBridge website, where we will be keeping our family and friends updated on Zohara's journey through the repair of her scimitar syndrome.  Please feel free to share this site with others who would like to be updated. Thank you for visiting. We really appreciate your love and support and feel so lucky to have you in our warrior army.

Zo’s story

Zo was born full term via an emergency c-section on May 25, 2020, her due date. Her birthweight was surprisingly low at just 5 lbs 12 ounces. At first, it didn’t seem anyone could figure out why she was so tiny...Just a petite baby they thought.

A day or two after Zo was born there was a scare about her spine, but that got cleared. Then it was a question of her thyroid, but that got cleared too.

Two weeks after Zohara was born, we were at the pediatrician’s office and our doctor said, “Her heart has a slight murmur. I’d give it a 1 out of 6. Chances are it’s nothing, but let’s have her get it checked out by a pediatric cardiologist.”

Due to COVID regulations, only one caregiver could be with Zo in the office. Rachael went to the cardiologist office. Alone. Three weeks after a c-section...Max had to stay home, sitting on edge, just waiting for the phone call to hear the news. Any news.

At the time, Rachael was exclusively breast feeding, so she had to navigate the three hour appointment by herself...in the hot office...with a screaming baby...in a mask. In some ways, when the sounds of all the testing faded away and the doctor walked into the room, the news he shared was a blur.

The cardiologist said, “I want to explain to you what is going on inside your daughter. It is worrisome.” In many ways, Rachael didn’t even hear the explanation, details only coming back to her in the days following that appointment. She just stood there in shock that such a beautiful little bundle could have so many little issues inside. It was a long list of problems, but the rarest issue he named was scimitar syndrome a 1 in 100,000 congenital heart defect. Max actually had to call the doctor’s office after Rachael got home to hear the explanation again because it was all too complicated and shocking.

In retrospect we thank God our pediatrician caught the murmur and advised us to get it checked. We also thank God we had easy access to a pediatric cardiologist and the science to discover all that was wrong with Zo’s heart.

For the next few weeks we weren’t sure what Zohara’s future would look like. Googling scimitar syndrome is a dangerous little endeavor. Because it is so rare, there is very little literature to go on, and the research that is available isn’t encouraging. Only in the last five years have patients with Zohara’s syndrome really excelled.

We can tell who has googled “scimitar syndrome” after we tell you about what Zo has. We see it in your eyes and hear it in your voice when you ask how she’s doing. We felt that way as well in the early months.

In the weeks following her diagnosis we sobbed. We held each other close as we closed our eyes and tried to sleep but for a few moments. And once our new reality set in we knew that no matter what her future held we were going to take it one day at a time and provide Zo with the best love and care we could muster.

And that’s what we’ve been doing. That’s how we have made it to this point. One. Day. At. A. Time. Over the weeks and months we’ve added doctors to our team. First, of course, her cardiologist, then a gastroenterologist to help her with her caloric intake, then a pulmonologist to provide RSV shots and monitor her lungs. Some days we were ready to transition her to a feeding tube, fearing we just couldn’t get enough calories in her no matter our patience...she just kept fighting the bottle.

It’s here that we are once again thankful for our network and community. After advocating at the doctor’s office that we believed she had silent reflux (another rarity), we finally got her on medication that seemed to help...but things still weren’t great. We soldiered on doing any creative thing we could to avoid having to put her on a feeding tube. Finally, mercifully, at her second GI visit, she tested positive for a cows milk protein allergy: casein and whey, not lactose—that’s a sugar (again, another uncommon diagnosis).

So then Rachael went dairy free, Zo went on a hypoallergenic formula (we mixed the two), and things seemed to improve for a bit around her eating. But it didn’t last very long and so it was time for Rachael to wean off the pump and for Zo to go exclusively on formula mixed with water. The magic combination. She also went on another medication to slow her racing heart, and finally Zo became a much better (though still difficult!) feeder at around 6 months.

Everything about Zo’s story has been complicated by the pandemic. And yet there have been silver linings: Even without the issue of Covid, Zo would have needed to isolate for at least her first year, as even a cold could land her in the hospital. We got to be home with her. Rachael got to pump much longer than would have likely been manageable had we been working from the synagogue. Zo received amazing daily care from her Nana (Cheryl), and her Safta (Deb), when she came to town.

Although we’ve skipped around a bit and missed more details,(thanks for still reading!) we are on the next stage of Zo’s journey. At 8 months on the 25th, she is the size of a 4 month old, though her cheeks are glorious like she’s smuggling a dozen acorns on each side. But she is strong and resilient and we, along with her doctors, felt the time was right for the surgeon to attempt her repair.

Right now we’re here with Zo in Boston. We were in the CICU and then the step down unit of Boston Children’s Hospital, after a successful surgery, and a slow but positive recovery process. After Zo’s surgery, Dr. Baird, her surgeon, spoke with us about what to expect. They will continue monitoring her closely and often for the first year post-op, but there is a lot of hope on the horizon. Dr. Baird even uttered the words “effectively fixed” for her condition. She may very well have a future just like all of us, except she’ll have badass scars to scare all the kids on the playground.

Zo remains every bit the fighter and the resilient little thing that she has been all her life.

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