“When I found out I was pregnant with my second child we had a 1 year old and had just closed on a new house. I had taken a pregnancy test on a whim after finding it in the bathroom while packing. I remember the first words I said to my husband when I saw those 2 lines. As I walked out of the bathroom with the test in my hand I looked at him and said, ‘what the hell did you do!’ I went and threw up and cried. Little did I know that moment would be the first of many tears I would shed.
Those first few weeks were a blur. Due to some health issues, my pregnancies were automatically labeled ‘high risk’. I was so sick. Simply breathing made me violently ill which made it hard to be a stay at home mother to a wild toddler. Before we knew it, it was time for the anatomy scan. My daughter was born with a single kidney so they were going to do a more in-depth ultrasound and take as many pictures as they could to make sure everything was ok with this baby and find out the sex. My follow up was scheduled for the next week to discuss the anatomy scan. Everything seemed normal and we left that appointment blissfully unaware of what was going to happen next.
We arrived at my follow up appointment and immediately I could feel something was off. As soon as the OB walked into the exam room she said, ‘The baby has both kidneys.’ Ok, great. ‘But we did find a few things wrong.’ My OB told us they found Bilateral Clubfoot as well as Bilateral Polydactyly. Ok, I thought. Those are fixable issues. We thought we were in the clear. We were wrong. My doctor wanted to send me to get a level 3 ultrasound to make sure there weren’t any spinal or cranial issues as one of my medications carries a higher risk of developing those. They sent the referral and were able to get us seen within a week.
This specialized ultrasound took about 2 hours. It took the doctor what seemed like forever to read it and come back in the room with us. He confirmed the Bilateral Clubfoot and Bilateral Polydactyly. Then it happened. I remember it so well like it was happening in slow motion. He looked me in the eye and said there was something wrong with the baby’s heart and one of the lungs. He said the heart was being pushed over to the right side of the chest and compressing the right lung. The doctor said the heart also looked mirrored and inside out. My mind was racing. Then came the words no parent wants to hear. ‘You will most likely be planning a funeral instead of bringing home a baby.’ In that moment our whole world shattered. We met with a genetic counselor and had a ton of bloodwork done. They scheduled a Fetal Echocardiogram for 2 days later. I cried the rest of the day and my poor husband was mostly nonverbal.
I made it through the fetal echocardiogram (barely), and we were given a bit of good news. The pediatric cardiologist said other than the heart being on the wrong side it was perfectly functioning and one of the most beautiful hearts he had ever seen. It was a tiny ray of hope but it still didn’t explain why the heart and right lung were the way they were. The testing went on. We had a new ultrasound every week to check growth and try to find out what was going on. The genetic testing showed no genetic anomalies, so they didn’t feel the need for an amniocentesis. But it still felt like with every ultrasound they found something else wrong.
It was getting close to the end of the pregnancy and we still had no answers. Finally, at 32 weeks we would find what we needed. It turns out the baby had a congenital birth defect known as Congenital Diaphragmatic Hernia (CDH for short). This means the baby’s diaphragm did not form fully during those first few weeks of gestation. There was a rather large hole in his diaphragm that had let his intestines (both large and small) and a few other organs move from his abdomen up into his chest cavity. This is what was causing his heart to be pushed over and his right lung to be considerably smaller and part of his lung damaged. We had never heard of CDH before so into research mode I went. It turns out that about 1600 babies are born each year with CDH (the same number as Cystic Fibrosis or Spina Bifida), but not much is known about this birth defect and many people never even hear about CDH. There is about a 50% survival rate at birth, and a 50% survival rate after the initial repair surgery.
So, my pregnancy went on. Those last few weeks were crazy with multiple doctor appointments, meeting with neonatologists and pediatric surgeons. Then my water broke. Just over 24 hours later our baby was born. A son. And to everyone’s surprise, he not only took his first breath on his own but let out an ear-piercing wail announcing his arrival. My husband was able to cut the cord but then the NICU team had to take over. Our little boy was intubated and placed in a transport incubator and taken to the NICU before I could even see him. In fact it was almost 4 hours before I would get to see him. But even with all the tubes, wires, leads, and machines he was so beautiful. Bright crystal blue eyes, strawberry blonde hair, and soft pale skin. And to everyone’s surprise he only had 10 toes and there was no polydactyly at all. The next morning, we were able to hold his hand and learn to take part in his care routine.
The NICU team was amazing. And our son, who we decided to name Elijah Jameson, was doing so well physically, but was staying agitated so they had to keep him sedated most of the time. He had his repair surgery at 5 days old. At 6 days old, they took him off oxygen and we were finally able to hold him. At 7 days old, and 2 days after major surgery, he was moved to the step down unit of the NICU. Two weeks after birth, we were able to bring him home and spend his first Christmas as a family of 4.
At a month old, Elijah began casting to repair his bilateral clubfoot. Things were going well at home though he was a particularly needy and fussy baby. Then at 3 months old, the worst happened. He began vomiting. Profusely. Bright, neon yellow vomit. We took him to the doctor who immediately rushed him to the ER. Our world was shattered again. Elijah had a major bowel blockage and a ton of scar tissue from his original surgery. It was life or death. They rushed him into emergency surgery. Once again, we were faced with the possibility of not bringing him home. Once again, he beat all the odds and baffled all the doctors and was released just 3 days after having a second major surgery.
We came home and he was a happier baby, but we had multiple weekly doctors’ appointments, with many different doctors. He was so tiny. Barely on the growth chart at all and he was not meeting any of his milestones. This led to a diagnosis of failure to thrive, and when he should have been at an age to begin solid foods, he was still on thickened specialized formula. It was a never-ending battle of feeding, vomiting, changing clothes, giving stool softeners, reflux medication, and us being terrified that this nap time or bedtime would be the time that he would choke to death on his own vomit. All of a sudden one day he slowly began gaining weight, not much, but enough to keep the doctors happy. There was less and less vomiting as his reflux was getting better.
All the doctors originally thought not meeting his milestones was a result of all that he went through in his early life. However, as he got older it became apparent that there was more going on. His amazing pediatrician sent him to have an assessment done for Early Intervention services. That was heartbreaking and made me feel like a failure as a mother. Here was my almost 1-year old son who was only at a 1-month age developmentally across the board. He could not even sit up unassisted. They immediately started him in Speech therapy, Occupational therapy, and Physical therapy. We were given a referral to a Pediatric Developmental Specialist. She did a complete assessment, and that led to the diagnosis of Global Developmental Delays, Sensory Processing Disorder, and severe hypotonia, as well as labeled as extremely high risk for Cerebral Palsy. Once again, we were devastated. The developmental specialist began him on intensive therapy for all 3 areas. That was in April of 2019.
Since then, he keeps thriving. We were able to stop seeing his GI specialist. His reflux is completely gone. His orthopedic doctor has put him in daytime SMO’s to help with the Hypotonia and he is starting to cruise. He finally said his first word about 2 months ago. I cried. I mean ugly cried. We use sign language to communicate as best as we can. He is up to 4 or 5 words (that we can understand even if others cannot). Some days are better than others. But each day he is making more sounds and trying to imitate words. He is even helping us to get him dressed and undressed. His therapists have been amazing. But in each way he improves verbally and physically, his sensory problems become worse. When we go back to the developmental specialist we will begin testing Elijah for Autism and Cerebral Palsy.
Every day I see his struggles. Every day I cringe when I tell people that he is special needs because I get faced with the ‘but he looks so normal’ discussion. But in all his daily struggles, I see his vibrancy. I see a little boy who fights every day to be like his big sister. I see all his victories. And they are amazing. His little laugh lights up the room and his squeals of pure joy when he is playing make everyone smile. He brings nothing but joy and love to everyone he meets. He was made this way for a reason, and I know he is destined for great things. This little boy has taught our little family to face adversity head on. His story is our story. We have been forever changed by the things he has faced in his short life. He has proven every doctor wrong when they said it wouldn’t happen or it couldn’t happen. He has defied every diagnosis that they have given him. And no matter what label they give him, he is our good and perfect gift from God. And we will continue to carry him until his little legs are strong enough for him to run.”
This story was submitted to Love What Matters by Breyen Scearce. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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