Liberty’s Miracle Story – Celebrating National Down Syndrome Month

  • Ergobaby
  • Mar 21, 2024
World down syndrome day

I’m Madison Sponsler, wife to an incredible husband and mama to two beautiful girls. This is the story of my miracle baby, Liberty.

Liberty is my first born. My pregnancy with her was beautiful and complication free. I loved every second of my pregnancy and the ultrasounds and blood tests all confirmed that our little bundle of joy was perfectly healthy.

At forty weeks I started having contractions. My husband and I were beyond excited to meet our beautiful girl. My labour was seamless and my delivery was fast. Everything had gone exactly how I dreamed it would during the nine months it took to grow her.

But my dream came to an abrupt halt when they placed her in my arms for the first time. Immediately, I knew that she was not like any newborn I had laid eyes on before. After a few moments of taking in my new daughter, I knew she had Down Syndrome.

Liberty in a Ergobaby Carrier

The midwife dried her off, did her newborn evaluation, and told me that I should see a paediatrician the following morning. Since there was no mention of Down Syndrome, I tried to convince myself that I was just a naive first-time parent and we left the birthing centre as a new family a few hours later.

Our first night with Liberty was horrific. We didn’t have a single successful feed. It took my mum, my mother-in-law, and myself just to get an eight-pound baby to take a single drop of milk. No one was able to sleep and as the night went on, we began to realise that something might be seriously wrong with our baby. As if the night wasn’t bad enough, we woke up the following morning to her choking and she turned completely blue.

We rushed to the Emergency Room and within seconds of arriving, she was snatched from my arms and hooked up to more wires and tubes than I had ever seen in my life. Shortly after she was settled, the doctor walked in and asked my husband and I, “Did you know your daughter was going to have Down Syndrome or am I the first person to tell you?”. He then proceeded to explain how fifty percent of children with Down Syndrome have a heart defect and that Liberty was apart of that fifty percent. Some minor heart conditions heal on their own, but that wasn’t Liberty’s case, we were told that around six-months-old, she would need surgery to repair her heart.

She spent the first week of her life in the NICU. We worked on her feeds and were slowly able to wean her off oxygen (with the help of daily medication). When she was eight-days-old, we got to take our sweet girl home for a second time.

The next six months were some of the hardest months of my life. Because of her heart defect, Liberty stayed extremely sick. We became “frequent flyers” at our local Emergency Room and had more hospital stays than I care to remember.

When she turned six-months, my husband and I packed up our hospital bags and carried our fourteen-pound daughter back into the hospital where she was diagnosed to repair her heart. Before we handed her over to the nurses, the surgeon sat down with us and explained that, due to the size of her valves, her specific repair was going to be very complicated. He went on to tell us that even if he was able to fix her heart, he didn’t have much hope that the repair would hold.

Then we sat in the waiting room for the longest day of our lives. After eight hours, Liberty’s surgeon walked into the waiting room to go over the results of the surgery. In awe, he told us how the repair was almost perfect and that she would most likely never need another surgery (a major concern when we walked in that morning). Shortly after, a nurse walked us back to see our baby girl.

Like the miracle that Liberty is, we spent less that four days at the hospital from the time that we handed her over to the surgeon to the time that we loaded her up in the car to drive her home. The doctor who discharged us had never discharged a cardiac patient that early, but couldn’t think of a single reason to keep her in the hospital another night.

Liberty’s Family

We had finally made it through the hard part of our journey with Liberty. Between the trauma of it all and being separated by hospital stays, Liberty and I hadn’t bonded like I had dreamed of when I was pregnant with her. I wanted to make up for the time that had been taken from us, so I began baby wearing every second that I could.

Baby wearing made a huge difference in our relationship. It helped me heal from the trauma of the NICU and surgery. It also helped Liberty learn to trust me and heal from her own medical trauma.

Two-and-a-half years later, Liberty is a spunky three-year-old. She loves dancing and is absolutely thriving in her ballet class. She is now a big sister, but acts more like a mum to Ember, our second born. She also started preschool in September and can already recite the alphabet, count to ten, name her colours and her shapes! She is beyond smart, she keeps us laughing daily, and she’s the most beautiful toddler I’ve ever met (inside and out).

Baby wearing helped give us our baby back. Our family wouldn’t be where we are today without it. We are so grateful for Ergobaby and the baby wearing community for supporting us in every stage and every step of the way.