‘We were told, ‘She may not be born breathing.’ Scared was an understatement.’: Mom gives birth to baby with DiGeorge syndrome, ‘She’s our miracle’

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“Before December 28, 2016, I didn’t know what the acronym CHD (congenital heart defect) meant. Now, it’s one of the most important things about us. December 28, 2016, was diagnosis day. I will absolutely, never forget that day. We were terrified with our hearts beating out of our chest and not sure what to expect as we underwent a fetal echo of our baby girl, Emelia’s, heart while she was in my belly.

Both of our moms joined us as we received the news about our unborn baby girl having a congenital heart defect, Tetralogy of Fallot with Absent Pulmonary Valve. This means she has four abnormalities of her heart, as well as no pulmonary valve. Our world was rocked. We didn’t know where to go from there. In 4 short months, we would bring a baby into the world that would need open-heart surgery soon after birth in order to survive. Our firstborn baby. We were already terrified to be new parents and now medically complex was thrown into the mix as well.

Courtesy of Ciara Karavangelos

We were told things like, ‘She may not be born breathing,’ and ‘multiple surgeries throughout her life.’ Scared was an understatement. We prayed our way through those months. While everyone around us prayed we would receive the miracle of healing, we prayed the Lord would be glorified. And to be honest, we didn’t feel like it was in His plan to heal her heart. We knew he would be glorified more in our lives if we had to go through the trials and hardship of a medically complex child and lean on Him all the more. The next few months were agonizing as we waited for our girl to be born. There were so many unknowns about the future, which made the wait feel even longer. We were asked multiple times if we wanted to terminate. You heard that right, MULTIPLE times. Saying no once wasn’t enough. I wish they could see our miracle girl now.

Fast forward to April 21, 2017, our sweet baby girl was born BREATHING! Everything about her birth and days to follow was a miracle. She needed some help in the NICU immediately after birth but we finally got to hold her for the first time at 5 days old. And we took her home at just 11 days old.

Courtesy of Ciara Karavangelos

We then received news of yet another diagnosis that completely wrecked us. Emelia was diagnosed with 22q11.2. Some refer to this as DiGeorge syndrome. 22q11.2 is a microdeletion within the 22nd chromosome. This syndrome comes with over 180 different symptoms, with no child having the same. It is such a large spectrum that added MORE unknowns for Emelia’s future. 22q is what caused her heart defect, and we had no idea what other issues It may cause her in life.

Courtesy of Ciara Karavangelos

Everything about having our first baby felt ‘not fair.’ We just wanted normalcy. We wanted to be at home, having sleepless nights with our newborn. But instead, we were in a hospital room day in and day out with our girl hooked up to tubes and wires. I came across a poem called, ‘Welcome to Holland,’ written by Emily Perl Kingsley. This poem brought me peace and a new perspective on life with our special girl. We started to see the beauty.

Courtesy of Ciara Karavangelos

After an extremely hard and scary 2 weeks at home with her not eating and constantly crying, she had an episode at her pediatrician’s office called a ‘tet spell.’ This is when the body’s oxygen levels drop extremely low. 911 was called and she was rushed to the hospital. She was then admitted to grow some more and undergo her open heart surgery at just 6 weeks old. It was a long, terrifying 8-hour surgery. One of the hardest things we’ve ever done is hand our baby off to a surgeon for her heart to literally be stopped.

Courtesy of Ciara Karavangelos

After surgery, she had a hard time coming off the ventilator so she was intubated for 11 days, but once she came off, she surprised everyone! Another miracle. She ended up coming home after a 2-month hospital stay, on a feeding tube too, which she eventually graduated at 16 months old.

Courtesy of Ciara Karavangelos

Today she is thriving. While she was in the hospital, on a breathing tube, one of her doctors said something we will never forget, ‘Your daughter is a strong one. She will climb mountains one day.’ And she quite literally does. We’ve gone on a few trips with her to the mountains, and she has done her fair share of climbing them. Emelia will need more surgeries in the future as she still does not have a pulmonary valve, but we are hoping that is still a few years out. Our greatest struggle right now is speech. Her family and close friends can understand her most of the time, but those who don’t know her still have a hard time, so we are working on it.

Courtesy of Ciara Karavangelos

I fear for the day when her peers start to notice she may be a little different. That she talks a little different or may do things differently. Most of the time these days, she seems pretty typical. She runs and jumps, she makes friends with EVERYONE, she is smart and kind and an amazing big sister. She is the most loving kid I know. I have never met a kid who genuinely wants to give a hug and a kiss to every single person she meets… which is not the best trait to have during a pandemic, might I add!

Courtesy of Ciara Karavangelos

While she was still just a brand new newborn, I posted this to my Instagram, ‘Throughout this pregnancy, I have said so many times the same words that Jesus said in the Garden of Gethsemane, ‘Father please let this cup pass from me.’ I didn’t want to go through it, at all. But looking at your face, hearing your cry, watching the way you uniquely breathe, I would do this all over again in the blink of an eye. ‘Yet, your will be done.’ Praising the Lord every single second that you take a breath because it’s another second we weren’t sure we would get. It’s extremely easy to Praise the Lord when things are going well, and we are keeping that in mind, so we know to Praise the Lord all the more when things aren’t. One step at a time baby girl, one step.’

Courtesy of Ciara Karavangelos

The Lord and our sweet miracle girl, truly have made every hard step worth It. We praise Him on the mountain and we praise Him when the mountain is in our way.”

Courtesy of Ciara Karavangelos

This story was submitted to Love What Matters by Ciara Karavangelos. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful stories like this:

‘You aren’t leaving without delivering.’ I sat in disbelief. After 7 days of life, they cut into his side.’: Woman gives birth to baby with CHD, ‘We are blown away by his strength’

‘He would only have half a heart. This defect is so dangerous that without at least three surgeries, our baby boy would die within his first week of life.’

‘I put you in your mom’s arms so you could be snuggled while you drifted off to sleep. I hid behind the curtain and shed silent tears. I still hear the echo of, ‘I’m so sorry, but he is gone.’

‘Do you want to tell me about her?’ I will never forget the way you leaned in, just like we were friends, and asked me about Dorothy.

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