‘What did I do to deserve this?’ My heart sank and chills ran through my body.’: New mom births boy with Down syndrome

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“Our journey started on Thanksgiving of 2019. We had just gotten home from Thanksgiving lunch with our family and my husband said to me, ‘I think it’s time for you take a pregnancy test because you’ve been very moody and mean lately.’ I looked at him and started mocking him. I thought to myself ‘I’m not pregnant, I can’t be.’ After a few minutes of going back and forth, I gave in and went to the restroom to take the test. My husband followed behind me. After taking the test, I set the test strip onto the counter. Immediately there were two lines. Speechless, staring at my husband with tears streaming down my face, I tell him ‘I’m pregnant! It’s positive!’ My husband, confused as to why I’m crying, asks ‘Are you okay? What’s wrong? Why are you crying?’ Wiping the tears away from my face I told him ‘these are happy tears!’ After years of trying, we were finally becoming parents.

Courtesy of Stella Hollins

I had my first doctor’s appointment a few weeks after taking a home test to confirm the pregnancy. Once it was confirmed, I had found out I was about nine weeks along with an estimated due date of July 19th, 2020. At about 13 weeks, we found out we were having a baby boy, and were ecstatic. Along with the many doctor visits, I did the prenatal screening. About a week or so after taking the test, the prenatal nurse had called me to go over the results. I answered, and the nurse had said ‘Your results did come back as high risk for Down syndrome.’ My heart immediately sank and chills ran through my body as I heard those words. I asked ‘what does that mean? Does my baby have Down syndrome?’ She then said ‘it doesn’t necessarily mean that the baby has Down syndrome. We won’t know until you take a test to confirm. We will send a referral for you to see a genetic counselor, and they will do an in depth ultrasound and tell you what your options are as far as testing goes.’ After I got off the phone with her, I started sobbing thinking to myself ‘What did I do to deserve this?’

Courtesy of Stella Hollins

My husband and I then attended our appointment with the genetic counselor and the ultrasound tech. The meeting with the counselor was about an hour long, and she went over a ton of information which is now all a blur to me. I remember her asking tons of questions about my family and my husband’s family. She basically explained to us what Down syndrome was, and what our options were if we chose to move forward with the amniocentesis or CVS testing to get a proper diagnosis. After our meeting with her, she escorted us to the ultrasound room. The ultrasound took almost two hours. After the ultrasound tech was finished, she told us that a doctor will be in to discuss with us the results. The doctor then came in and introduced herself. She said to us ‘we found a few soft markers which I’m concerned about.’ I remember feeling worried and scared as soon as she said that. The doctor then proceeded to show us what they had found, and said ‘there is no nasal bone, a hole in the heart, short femurs, and there is also a double bubble known as duodenal atresia, which are all markers for Down syndrome. I’m going to send a referral for you to see a cardiologist to check out the baby’s heart.’

Courtesy of Stella Hollins

After going over the ultrasound with the doctor, she told us she’ll give us a few minutes and the genetic counselor will be back to discuss with us on what we want to do. I can’t remember the exact percentage the counselor gave us as to what our chances were of the baby having Down syndrome. My husband and I discussed our options and I remember him telling me ‘at the end of the day, it is still our baby and I will stand by you on whatever choice you choose to make, but I feel like it is not necessary for us to take the test. I have faith that the baby will be alright.’ We decided take a leap of faith and move forward without doing an amniocentesis or CVS test. We told the counselor our decision and signed some documents stating that we declined the tests.

Courtesy of Stella Hollins

A few weeks later, I had an appointment to see the cardiologist for the hole in the baby’s heart. After getting an ultrasound of the baby’s heart, the cardiologist came in to explain what they saw. He drew a picture of what a normal heart looks like, and a picture of what my baby’s heart looks like with the hole. My emotions were everywhere. I held back my tears as the doctor began to say ‘because of where the hole is in the heart, it will not close on its own and the baby may or may not need heart surgery later in life, but we will need to closely monitor it.’ I left the appointment and called my husband as soon as I got in the car, and could not stop crying as I was trying to explain everything the doctor just told me.

For my 38th week prenatal visit, my doctor decided to send me downstairs for one last ultrasound just to check on the baby to make sure everything was okay, as we had decided on an induction date since I was high risk. I went downstairs and met with the ultrasound tech. After she was done she said to me, ‘I will be right back. I have to go talk to the doctor.’ I thought nothing of it as I waited. A few minutes later, a doctor comes in and says ‘baby is doing fine, but the fluid in your placenta is very low, which is not good for the baby.’ My heart started racing, and I immediately asked ‘what does that mean? Is the baby going to be okay?’ She said well, ‘I spoke with your doctor and she said it is best that we go ahead and admit you today to get you induced. Surprise! You’re having a baby sooner than you thought!’

I was admitted that afternoon and started the process. I was slowly dilating until I got to about six centimeters, and did not dilate anymore after that for a long time. The next day, doctors came in and gave me Pitocin. After I got the Pitocin, they noticed that the baby’s heart rate was dropping, and that the baby was not responding well to the Pitocin in which they called for a c-section. Everything happened so fast after that. Within 20 minutes, I was wheeled into the operating room. After I was prepped and ready, the doctor explained to me what he was going to do and just a few minutes after he yelled, ‘Yup! It’s still a boy. He is so cute!’ and then I heard his cute little cry and tears ran down my face as they whisked him away. I didn’t even get a chance to see my baby right after he was born. After I recovered from my c-section, I was able to go up to the NICU to see my baby boy for the very first time. I held him as tears flowed down my face. My heart was so full of joy. I spent the next couple of days in the hospital, being wheeled up and down from the third and fifth floor to see my son.

Courtesy of Stella Hollins

After I was discharged from the hospital, every day after my husband got off of work, we would go to the hospital to spend a couple hours with our son. When my son was five days old, he had to have surgery to repair his duodenal atresia, as it was causing eating issues for him. I remember waiting by my phone to hear from the doctor once surgery was over. A few hours later, they called and said, ‘The surgery went well. He did great!’ That was such a huge relief for us. A few days later, a counselor had called and asked to set up a video appointment to go over results for the newborn screening test to see if my son had Down syndrome or not. At the beginning of the appointment I remember the counselor asking us if we had any questions about Down syndrome, and if we’re aware of what it is. My husband quickly responded ‘we are aware. We just want to know if he has it or not.’

Courtesy of Stella Hollins

After going over some things she then told us, ‘it is confirmed that your son has Down syndrome.’ I held my back tears for as long as I could, which was not very long. My whole body went numb. I was confused. How could this happen to us? What went wrong? The counselor asked if I was okay, as she noticed I was crying. I just nodded my head and stepped away from the laptop as my husband finished the appointment. I remember hearing her tell my husband ‘it’s okay to grieve over the thought of the child you thought you were going to have’ and that was when I accepted that he had Down syndrome and everything was going to be ‘okay.’ My son spent a total of 20 days in the NICU. A few days before he was discharged, I received a phone call from an audiologist letting me know that my son had failed his hearing test on his left ear. She assured me that it is common in newborns as there could still be fluid in the ear, and that she scheduled another hearing test about six weeks out. After speaking with her, I thought, ‘Great, another thing to worry about!’

Courtesy of Stella Hollins

He was then discharged, and we couldn’t be happier to have him home. He had plenty of appointments lined up between seeing his pediatrician, cardiologist, and audiologist. We took him to this audiology appointment to do an extensive hearing test which took two hours. He passed on his right ear, but did not pass on his left, as he could not hear low frequency sounds. He now has a hearing aid for his left ear to help him hear better. He has had a couple of cardiologist appointments since being born, and at his most recent appointment, his cardiologist said to us, ‘He is like superman! He’s doing so well. Forget everything we said about him having to have surgery. His hole is closing on its own and he will no longer need heart surgery. I will only need to see him once a year!’ We were so happy to hear such great news. A huge weight has been lifted off my shoulders because the thought of him having to surgery again broke my heart.

Courtesy of Stella Hollins

My son is doing so well and surprises me every day. He has exceeded all of our expectations that we had for him. He brings so much joy to our family. He has taught me to be stronger and is the biggest blessing in my life. I could not imagine life without him. We certainly are ‘the lucky few.'”

This story was submitted to Love What Matters by Stella Hollins from Sacramento, Ca. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful perspectives from special needs moms:

‘He’s only measuring about 2 pounds.’ Tears began streaming down my face. Something was terribly wrong.’: Woman gives birth to baby with Down syndrome, ‘He’s uniquely formed’

I’m sorry your child has Down syndrome.’ Sorry is the last thing we feel. It’s impossible to imagine life without her.’: Teenager with Down syndrome becomes dancer, model, ‘She’s the best of us’

‘Aren’t you going to tell me congratulations?’ She wanted me to cry, but she wasn’t going to break me.’: Mom becomes Down syndrome advocate, ‘This is HIS journey’

‘But it doesn’t run in our family!’ I’m too young for this. Is it really happening twice?’: Brother with Down syndrome helps parents accept son’s diagnosis, ‘We had so much hope because of him’

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