‘The fetus has a condition not yet recorded in medical history.’ Only a teen, I was told I couldn’t care for a child with special needs.’: Teen mom says ‘my heart glows’ after birthing medically complex child

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“I found out I was pregnant in March 2020, the same week our state went into shut down for Covid-19. I was 18, living with my aunt and uncle and had only been with my boyfriend for 3 months at the time. We were terrified; I was terrified. It took me 2 weeks to tell my family I was pregnant. I waited as long as I could since I knew this was not the ‘right’ way to go about having a baby. When we told our families, asides from the initial shock, they were all pretty much instantly supportive and helped us in any way they were able.

At our first ultrasound, we found out I was roughly 6 weeks along and our estimated due date was December 2, 2020, However, it didn’t really set in that this little wiggling circle I saw on the ultrasound was going to grow arms and legs and become a baby. I wasn’t able to go back to work once our state opened for essential work only since we didn’t know how Covid would affect unborn babies or pregnant women yet. So, I started maternity at roughly 14 weeks pregnant.

All around my pregnancy was extremely easy at first. Only slight nausea, morning sickness maybe 2 times and of course cravings, but no one thought anything was wrong – especially since I was so young, the chance of something being wrong was so low. At our 20-week ultrasound, my boyfriend (Tyler) and I were so excited to find out the gender. We both had made our guesses and were now just anxiously waiting to see our baby. After the ultrasound tech showed us the baby’s cute little face and nose, she finally told us we were having a boy! Our sweet little Theo. I was in awe; it all finally felt real and my heart was glowing with love for my son already.

After 15 more minutes of the tech going over all the measurements on him, I kept noticing her go back to his head and neck to rescan it. I just brushed it off as first time mom fears and we went on just staring at our boy on the little screen. That night, I got a phone call from my midwife. I instantly knew something wasn’t right. She said she got our ultrasound results and wanted to see us first thing in the morning so we could talk more about it. Tyler told me it was probably okay and they have to talk to us about the results whether they are good or bad.

When we went in, I could already tell this was going to be something I didn’t want to hear. ‘He has a thickened Nuchal Fold, a rocker bottom foot, and we can’t see half his brain.’ All I remember is sitting on the patient table staring at Tyler; I don’t think either of us heard anything else she had to say. Within days we were seen at the nearest Maternal Fetal Medicine office, which was over an hour way, to get 3D ultrasounds and see a Genetic counsellor. The high risk ultrasound tech was absolutely amazing, she was
calm and she talked us through it, joked with us – she definitely made the experience feel ‘normal.’ After
she was done, our Genetic Counsellor told us he for sure has a thickened Nuchal fold but his brain and feet are completely average. We would have to go further south to the Maternal Fetal hospital to get an amniocentesis done. For the last time I felt relieved; I thought there might be nothing wrong at all, they told us it could just be he has a chunky little neck and that’s what I was hoping for.

Two weeks later, we got the amniocentesis done and roughly a month later when I was alone in my room trying to get a video of Theo’s little kicks, I got the call. It was one of those moments when your life changes so fast and you have nothing left to cling to. ‘The fetus has a chromosome deletion that is not recorded in medical history yet. Based on children with similar deletions he may have constant seizures, it probably won’t be able to eat, walk, talk, hear or breathe on its own. It probably won’t live past birth.’ I was hysterically crying on the floor, cradling my belly, hoping to god if I held tight enough I could fix this. She then said, ‘Oh, you’re crying.’ Of course I’m crying! She told me my baby was going to die most likely after assuring me it was most likely nothing.

The next morning, we drove to see her and she said, ‘You should seriously consider your options here.’ We asked what our options even were at 28 weeks and she told us we could have the baby, or as she  called it ‘have an early labor’ aka give birth and let our son go naturally. She did not hesitate to tell me I was a teen mom and couldn’t care for a child with special needs, we were young and we could try again. She told me a late term termination would be best for me and she was having someone at the MFM hospital call us to set one up. She was right; I had only just turned 19 two months prior and that’s probably why I believed her. Because I was now a high risk teen mom, who didn’t have a mom, so I thought I should trust my doctor to help me.

When we went to the MFM hospital, our doctor there was the sweetest and calmest lady we had seen yet, and the first one to congratulate us on the pregnancy. She introduced herself as the head OBGYN and the specialist in fetal genetics. Our doctor explained the Genetic Counsellor called her to set up a late term termination, but she wanted us to be 100% sure we understood our son’s diagnosis before we made a decision. She explained yes, Theo had a rare chromosome deletion, but it did not mean it was a death
sentence. All they knew at this moment was he has a deletion and it could effect his eating, walking, talking, breathing, etc., but it also might not and it almost definitely does not mean he won’t make it to birth. We then went over what would happen if we continued with the pregnancy and what would happen if we chose not to, and we agreed we wanted to give Theo a chance to show us what he could do.

The rest of my pregnancy was pretty normal physically. I got very round, went to my prenatal checks, had an ultrasound once a week, fetal echocardiogram once a month, and a 3D ultrasound every 2 weeks. Finally I went in for my 37-week appointment and our doctor told me I was being induced Monday at the very latest. I had to be induced because the MFM hospital was roughly 3 hours away from our home and we couldn’t risk me going into labor and not making it to a hospital with the right equipment for Theo and I. We went over the birth plan one more time so there were no surprises and Tyler and I booked a hotel for the weekend so we could wait for the call to come in.

Teen couple take maternity photos together in matching maroon outfits while the sun sets in the trees behind them
Courtesy of Mariah Schouten

Sunday at 4 p.m., we got the call to come in to start the induction. I was officially in labor at 9 p.m. on Sunday. It was a very slow and boring labor most of the time; there were 2 incidences when my or Theo’s heart rate dropped but nothing that needed immediate intervening. I had a very easy labor, I didn’t start feeling contractions until about 7cm and I only took a Tylenol for it. I got the epidural to get ahead of things, but it didn’t work for whatever reason.

At 9 a.m. on Monday, I was 10cm and it was time to push. As I was preparing myself for the pain I was about to endure, I looked around the room and saw what felt like 100s of people. I knew we would have 1 person from every specialty there to check on Theo, but I didn’t think it would be this much. After 12 hours of labor and 40 minutes of pushing, Theo was out. They placed him on my chest for 45 seconds, counting out loud, and took him away to get examined. Tyler went with Theo while I delivered the placenta, but my heart was yearning for my baby. Everyone else got to see him longer, hold him more, listen to his little cry; I was the last one in the room to hold him without 2 doctors also holding him.

Newborn boy swaddled in a white blanket sleeps in a baby swing with a feeding tube
Courtesy of Mariah Schouten

After what felt like 200 years, we all finally got cleared to go to the mother baby ward and Theo looked great. We knew they would be taking him again for a hearing check and a EKG, but we thought he’d be coming back. After 4 hours, I woke up from napping and asked my nurse where he was. She said, ‘The doctor will be in soon to talk to you.’ Theo’s Doctor came in and told us Theo was going to be been to
the NICU, he wasn’t able to breathe, suck, swallow and he had 2 holes in his heart. They brought him in with us while they prepped his room. It felt like the shortest 10 minutes of my life. My heart broke while we held our son and cried. We didn’t know what this meant, we didn’t know anything besides that our son wasn’t okay.

Newborn baby boy with a feeding tube sleeps peacefully in his mother's arms in the hospital
Courtesy of Mariah Schouten

Theo spent 15 days in the NICU total. It was some of the scariest and most beautiful moments of my life. It tested our faith, our relationship and our sanity, but all 3 of us went home stronger. Theo went home with multiple specialties and therapies set up to follow him as he grew including neurology, neurodevelopment, cardiology, gastroenterology, urology, endocrinology, orthopedics, occupational, speech, feeding and physical therapies, pulmonology and audiology. We went home when Theo was just shy of 3 weeks old and we got roughly 2 months of ‘normal’ parenting life, then things slowly got worse but it felt so, so fast.

Little boy born with rare chromosomal deletion sleeps in the NICU at the hospital
Courtesy of Mariah Schouten

At 3 months old, we went to the children’s hospital because Theo had stopped taking his bottles almost out of the blue and was vomiting constantly with a cough as well. Our nearest children’s hospital was 2.5 hours away and Theo was vomiting nonstop, then about 15 minutes from the hospital he started choking badly. We were in the middle of the highway with no where to safely pull over and since I was sitting in the backseat with Theo I had to take him out of his car seat. It was in this moment while I was trying to help my 3-month-old breathe, driving down the interstate crying and Tyler and I screaming at each other over what to do, where w were were both thinking what we didn’t want to say: ‘Are we going to lose our son?’

We finally got to the hospital and they admitted him and told us he was aspirating on his milk and needed his NG tube back in. At the time we were only allowed 1 parent in the hospital with him, so it was just me learning everything, taking notes and trying to get a grip on how to handle a long term feeding tube while also telling Tyler everything I could. We went home for the second time, which we hoped was our last time, but with our luck it wouldn’t be. Just after Theo turned 5 months we we’re having dinner at my family’s house and Theo ‘zoned out,’ which I didn’t double think because it was so close to bed time, then he vomited brown and red all over me and we instantly packed him in the car and drove to the nearest hospital we could which was 30 minutes from my family’s house.

Courtesy of Mariah Schouten

In the car Theo, couldn’t stay awake and it wasn’t in a tired way; he seemed like he was fainting over and over, going almost limp in seat. So after what we learned last time, we called 911 for an ambulance instead of risking it. The paramedics found his blood sugar to be at 25 when it should be at 60+. They took us to the hospital and they said nothing was wrong with him and sent us home within 3 hours with no answers or anything. Over the next 3 days, he developed a bad cough, so Tyler and I decided to play it safe and take him to the children’s hospital where all his specialty doctors were.

Theo was admitted within 2 hours. They ran multiple tests on him: covid, blood tests, x-ray, EKGs and EEGs. He had rhino enterovirus. Rhino enterovirus is pretty much a common cold, but for Theo just a common cold is very scary because all his mucus and spit goes straight into his lungs. He was put on oxygen with a nasal cannula, he was being suctioned every 2 hours and was put on steroids to protect his lungs best we could. We were in the hospital for 27 days. I stayed with him every single day and night except 3 nights Tyler got us a hotel so I could have a break from the nurses in and out all night.

Little boy with rare chromosomal deletion lays on his back on a white blanket with a feeding tube in
Courtesy of Mariah Schouten

Theo will be 1 in 3 weeks. He has had 2 surgeries, a G-Tube placement and a hypospadias fix. He was only admitted 1 other time since for 4 days for G-Tube complications. Theo has seen 13 specialties total since birth, he’s graduated from 3 and currently is followed by only 10 now! He is unable to go to daycare due to health risks, so he stays home with me and we go to roughly 2-3 appointments at the children’s hospital a week. He is the strongest, happiest and funniest boy and we are so incredibly blessed to take this journey with our boy.”

Little boy with rare chromosomal deletion looks at his mom while playing on the floor in denim overalls
Courtesy of Mariah Schouten

This story was submitted to Love What Matters by Mariah Schouten. You can follow her journey on InstagramSubmit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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