“3, 2, 1,” counting down, I held my breath and flipped the test over. There they were – two pink lines staring up at me. I paused, waiting for the influx of emotion to wash over me. It never came. As much as I had been hoping and praying for this, I couldn’t seem to allow happiness to set in.
That’s one aspect of miscarriage no one talks about – detaching yourself from subsequent pregnancies. After two painful losses, the first being Christmas night and the other on my husband’s birthday, I became numb to all things baby.
In an attempt to shield my husband from further heartache, I decided to hold off on sharing the news. It wasn’t an easy secret to keep, especially once he started asking why I wasn’t feeling well or having my usual glass of wine with dinner.
I thought up a million cutesy ways to tell him. Maybe I could wrap the test like a gift or set out a pair of baby booties on the counter. After all we had been through, I wanted it to be special. When the moment finally came, though, my courage and creativity went out the window. I buried my face in his chest and cried, “I’m scared to lose another baby.” What a way to find out your wife is pregnant.
After eight long weeks of overthinking and recurring nightmares, I was scheduled for an ultrasound. “By this point, we should see a heartbeat if the pregnancy is viable.” The doctor’s explanation came across as threatening in my traumatized brain. I laid back with my belly exposed, preparing for yet another disappointment. My husband watched the monitor intently while I closed my eyes and grabbed his hand. After what felt like an eternity, the tech spoke the words I never thought I would hear. “There’s the baby… and there’s the heartbeat.”
The term ‘rainbow baby’ refers to a baby born following a loss, like the rainbow after a storm. While the damage caused by the storm remains, the rainbow shows us that light can emerge from the darkness.
My pregnancy, although a blessing, was far from easy. It was littered with complications and scares from gestational diabetes to a subchorionic hemorrhage. Thus I was considered high risk and was heavily monitored. While most women spend their pregnancy making registries and painting the nursery, I was checking my blood sugar three times a day and having monthly growth scans and NST’s with Maternal-Fetal Medicine.
On top of everything else, the obvious risk of Hemophilia lingered in the back of my mind. As an obligate carrier, I had always been aware of the possibility of my children being affected. After weighing the options, my husband and I declined the amniocentesis. We chose faith over fear and decided to wait until after birth to find out his status.
Like the majority of practitioners, my OB-GYN wasn’t familiar with bleeding disorders. So as expected, I was referred to a hematologist for further care. Going into that appointment, I didn’t know what to expect. Despite my family history, it all felt new and unnerving. Pacing around the cramped waiting room of our local HTC, I was taunted by magazines and pamphlets featuring joint bleeds, hematomas, self-infusion, and other intimidating aspects of life with a bleeding disorder. Just as the walls started closing in on me, I heard my name being called. I was greeted by a cheerful nurse who escorted me to an exam room.
From there, it was a revolving door of team members in and out, each with their own specialty and guidance. Unlike the standard level of care at a typical doctor visit, this one had a personal element. It was comforting to know I was in good hands. Though the mood tensed up when the genetic counselor began throwing a swarm of information at me – gene mutations, chromosomes, factor levels. It felt like a complicated biology lesson. I left there with a head full of data and emotions to sort out.
Baby RJ joined us earth-side in early October 2021. He was healthy and beautiful, the missing piece to our family. As planned, his cord blood was collected and sent off for testing. Thankfully, I was too distracted by newborn cuteness to focus on the wait. Reality set in when the genetic counselor called, interrupting our morning cuddle session. I knew the results before he spoke them; his tone said it all. I had spent the last 9 months readying myself for this moment of truth, but suddenly all of my preparedness fled, leaving me vulnerable and confused. Naturally, I went through a grieving process. The life I had envisioned for us was being ripped away and replaced by endless worry.
Despite the reassurance from our hematologist about how far healthcare has come over the years and how much promise lies ahead, I couldn’t pull myself out of my postpartum slump. It wasn’t until I began connecting with other Hemo moms that I found a beacon of hope. Their courage as parents and the resilience of their children inspired me. Instead of being kept in a bubble, locked away from the world, they were allowed to be fully immersed in it. Seeing them playing sports and participating in normal childhood fun was the solace I needed.
It was then that I found my strength. My sorrow transformed into purpose as I became committed to education and advocacy. Raising a child with a bleeding disorder may not be the journey we planned to embark on, but there’s always a rainbow after the storm.
Ashley and her husband live in Pittsburgh, PA with their two boys (aged 8 years and 2 months), one of whom has Hemophilia A and one who does not.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals’ experiences. While extensive efforts are made to ensure the accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.
“Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals’ experiences. While extensive efforts are made to ensure the accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.
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