Although we’d had nine months to plan for unmediated vaginal birth after caesarean section (VBAC) all-natural water birth of my fifth and final baby at a birth center, I wasn’t prepared for what was about to happen. Nobody was.
We had the best prenatal care, and several sonos confirmed we were ready for delivery day, so imagine my surprise when, as soon as she was born, we had to take my newest daughter, Amadeus, to a Dallas hospital because of her low resting heart rate and a possible diagnosis of Down syndrome (DS).
I felt in my heart she did have Down syndrome because I could see it in her eyes and the midwives at the birth center could see it as well, but I was worried about her heart.
I looked at my daughter standing beside me, and you could see the fear in her eyes
All my kids were so confused. My husband and I didn’t even know how to explain, nor did we even speak the whole car ride over. My kids kept asking why we weren’t going home as we did after the previous birth. We were speechless.
Arriving at the hospital, we were taken care of quickly. The nurse that took our information at check-in was harsh and rude and couldn’t believe we delivered her at a birth center and after she checked her body temperature she quickly whisked her away without warning, leaving me (in a wheelchair because I had just given birth a few hours earlier), my husband, and my oldest daughter.
Moments later she came back and instructed us to quickly follow her. We entered a room full of nurses and our sweet new little baby, clothes cut off and hooked up to every machine you could imagine. I looked at my daughter standing beside me, and you could see the fear in her eyes. No one was talking.
I finally yelled out a “HELLO?” A nurse finally came over to explain what was happening. My daughter was struggling to maintain good body temperature and the staff were concerned for her heart.
The first few things I remember reading were that their lifespans were short. I was devastated!
They wanted to keep her in, but only one of us could stay. So my husband and my daughter left. I wasn’t about to leave my new baby at the hospital alone. That night I googled and read up as much as my brain could hold about Down syndrome.
We didn’t mention the possible diagnosis to anyone because we wanted to make sure it was confirmed before we talked about it. The first few things I remember reading were that their lifespans were short. I was devastated!
Here I was, I’d just had a baby, and no one could give me any answers, and I was alone without my family. This was not what I had planned. This was not how I planned to spend my maternity leave.
The doctors confirmed that she had a heart defect that would require open heart surgery
I wanted to be there to see if my older kids (Xavier 11, Kaydence and Zayden 9 and Ezra 2) were ok. I was better at answering questions than my husband – I felt so helpless!
Three days later the doctors confirmed that she had a heart defect that would require open heart surgery later in life.
And the next words said to me I will never forget. The doctor came in and said, “I’m sorry, but your daughter has Down syndrome”.
Why were they sorry? Not once in the hospital did a nurse or a doctor congratulate me on my precious new daughter, because that’s all I saw! All they saw was a diagnosis.
We were sent home a week later with a beautiful baby girl with Down syndrome, and we didn’t care because we loved her and were completely obsessed.
I told them her heart would be fixed one day
Our kids were so confused because they didn’t see her diagnosis either – all they saw was their sweet baby sister.
I told them her heart would be fixed one day and that she will show us what it means to have Down syndrome.
She is just as able and capable as anyone, but it may take her just a little more time! They were worried but later fell in love with the fact that she had Down syndrome and the way she’s had such an impact on our family so far.
We found our groove as a family. We were still learning about Down syndrome, and we became involved with a group called the Down Syndrome Diagnostic Network (DSDN).
They have become like family.
In a panic, I took her to hospital
We may have lost a few friends and some family since Ami’s birth but, with DSDN, we have gained the support of an incredible tribe.
On December 7th, 2017, Amadeus started to struggle to breathe. My husband and I weren’t sure what to do.
In a panic, I took her to hospital.
That journey was the scariest time for me yet. The winter takes the lives of many babies with DS , especially those who are smaller and haven’t had heart repairs yet.
I cried and prayed to God for him to please not take my daughter away. I kept stopping the car to check if she was still breathing. I kept thinking “I just have to make it to the hospital, I just need to make it to the hospital.”
When I finally reached the hospital, Ami’s color was terrible. I carried my limp daughter into the hospital. The only words I could say was, “She has a heart defect.”
She was promptly hooked back up to all the machines. She was definitely in heart failure. I just sat there helpless and alone again. Finally, the next day test results showed she had respiratory syncytial virus (RSV). Children with DS suffer more often and more severely from respiratory tract infections, so I was worried beyond belief.
It was hard to once again be without my husband but he was taking care of the kids, and he had to work because the medical bills were stacking up.
Luckily, I’d got her to the hospital really quickly, although the doctors told me it would get worse before it got better – they weren’t kidding.
Because each breath was a struggle, they gave Ami a feeding tube, so she didn’t have to work for her food (she exclusively breastfed with me and had never taken bottles) which meant less work for her heart.
I just knew God wasn’t ready to take our baby girl away at four months
But they also gave her ANOTHER diagnosis. This one ripped my heart out! Failure to THRIVE! I couldn’t and wouldn’t believe it! She was doing amazing! She was just sick! She would get through this. I have never shed as many tears as I did when I replayed those words over and over in my head.
It was tough, too, being in a hospital where many babies with DS were passing away. But I just knew God wasn’t ready to take our baby girl away at four months.
Twenty days later, and after celebrating Christmas in hospital, Ami was discharged. She had a feeding tube, but she was good to go.
We were discharged into the biggest flu outbreak I had ever seen!
And with five kids, three that are in school, one at daycare and my husband and I both working we were prime targets for the flu. We turned down anything extra. Holidays, birthday parties, dinners. We didn’t do ANYTHING we didn’t HAVE to do
Our 12lbs, now-thriving baby finally had her open-heart surgery in February at Cook Children’s Medical Center in Fort Worth to repair the cardiac defect. We used the hashtag #Ami-tourage (Ami’s entourage) for people who wanted to offer support.
It helped me go through that whole day knowing that there were so many people rallying around her and us through the surgery. It just gave me a peace of mind and confidence that we were going to be okay because unfortunately, not all babies make it through that surgery.
My daughter was being prayed for by so many people!
The day before the surgery our story went viral and the next thing I knew we were getting a call from People Magazine and receiving prayers from all over the world. My daughter was being prayed for by so many people! Ami was discharged a week after the surgery.
We began sharing our lives with the world and shining a light on Down syndrome! Ami has shown all of us that Down syndrome is just that. A diagnosis and it’s not who she is. She is Amadeus, our daughter.
Since the surgery, Ami has overcome so much. She needed therapy to help her to eat. She couldn’t even put her hand in her mouth without gagging and couldn’t tolerate tummy time because she had zero endurance or strength.
Ami started therapy late in the game because of our long stay in the hospital for RSV. We had to set a goal, and it seemed so far away, but I wanted her to be able to sit unassisted and eat her birthday cake for her first birthday. That gave us six months.
During those six months, our life returned to normal. We were able to get out of the house and be around people. We’ve taken many road trips, family outings and even a family vacation to the beach!
Ami’s FIRST birthday was exactly a month ago, and I’m here to report that she DID sit and EAT Her FIRST BIRTHDAY CAKE! Our daughter is INCREDIBLE!
I get approached on Instagram and Facebook by moms and dads on how we have helped them with the diagnosis of their babies! We’ve been told we have saved lives and possible terrible decisions just by sharing news of our precious daughter and how she is thriving with Down syndrome!