By: Sarah Mitchell
Updated: Oct. 11, 2023
During my pregnancy, I was aware of the possibility that my daughter, Mia, might have Down syndrome. While I wouldn’t admit it, I felt a twinge of fear, especially regarding potential heart complications. I followed my doctor’s advice diligently, taking each day as it came, uncertain of what the outcome would be. Researching too deeply felt overwhelming, so I held on to the belief that Mia would arrive “just fine,” whatever that might mean.
When Mia was born, she was indeed beautiful and tiny, immediately capturing our hearts. However, those initial hours were filled with anxiety. She was taken to the NICU due to low oxygen levels, which the doctors couldn’t explain. They hesitated to administer oxygen, fearing it might complicate a potential heart issue. We anxiously awaited the cardiologist, who was able to conduct an echocardiogram and reassured us that while there were minor concerns, her breathing issues were not linked to her heart.
After a temporary oxygen fix, we learned that Mia’s tongue was the culprit behind her breathing difficulties, something I had overlooked during my limited research. Babies with Down syndrome often have larger tongues, which can obstruct their airways. This meant we had to monitor her positioning carefully. Over several days, Mia fluctuated between needing oxygen and doing well on her own, but eventually, we were thrilled to take her home.
Yet, as we settled in, I found myself grappling with the reality that Mia’s childhood could differ significantly from her sister Ava’s. I worried about her forming friendships and the potential for bullying. It was a daunting adjustment, particularly those first few days at home when my husband and I were both exhausted and anxious. We were sent home with few guidelines, primarily to monitor her positioning to maintain safe oxygen levels.
One particularly frightening moment came just three days after we arrived home. Mia was sitting with Ava for a photo when I noticed her turning blue; her tongue had lodged against the roof of her mouth. Thankfully, we managed to resolve the situation on our way to the hospital, but it was a stark reminder of the challenges we faced.
As I reflect on Mia’s future, I experience a whirlwind of emotions—fear, excitement, sadness, and hope. I constantly worry about her hitting developmental milestones and the prospect of serious health challenges. The uncertainties can feel overwhelming. While many people encourage me to take things one day at a time, it’s a struggle to suppress the instinct to protect her from any pain or hardship.
As a mother, my greatest desire is for Mia to thrive, and I know my husband and I will do our best to support her. We’ve started her on early intervention services, which have shown promising results so far. I can’t help but feel grateful for Mia’s health and the joy she brings into our lives.
Despite the challenges, I am learning to embrace the spectrum of feelings that come with parenting a child with Down syndrome. The journey will be filled with ups and downs, but I’m committed to sharing Mia’s story with the world, celebrating every moment—good, bad, and everything in between.
For more information on pregnancy and parenting, check out this excellent resource on Progyny’s Blog. If you’re interested in home insemination, our article on the at-home insemination kit can provide valuable insights, along with the Babymaker home intracervical insemination syringe kit combo for those exploring self insemination options.
Summary:
As a mother navigating the challenges of raising a daughter with Down syndrome, I reflect on the mix of gratitude and fear that accompanies this journey. While I worry about Mia’s future and the obstacles she may face, I am committed to embracing each moment and supporting her growth. Our experience highlights the importance of early intervention and the emotional rollercoaster of parenting.
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