Episode 5: Hope Through Hardship: Megan's Journey from Infertility to NICU
After struggling to conceive for almost two years, receiving that positive pregnancy test felt like a miracle. I still remember standing in my bathroom, stunned by the second line appearing, then running outside to "let the dogs out" just so I could call my sister in tears. I was pregnant, but I was also bleeding, and my emotions were all over the place. Should I tell my husband? Would this pregnancy even last? After taking seven pregnancy tests that day (yes, seven!), I finally shared the news with my husband.
The pregnancy itself was far from easy. I experienced constant nausea and vomiting - literally not going two days without throwing up throughout the entire pregnancy. I also dealt with bleeding that lasted until I was 16 weeks along. Despite these challenges, nothing could have prepared us for what was to come during delivery.
The birth started typically enough. After laboring through the night and arriving at the hospital early morning, I was ready to push. That's when things took an unexpected turn. The doctors felt something unusual during examinations, initially thinking my son was face-down. After getting a second opinion, they discovered what was actually happening - my son had aplasia cutis, a rare congenital condition where he was missing skin and bone on his skull.
The moments after his birth were a whirlwind of emotions and activity. Instead of the golden hour I had dreamed of, my son was whisked away to the NICU. I only got to hold him for about a minute before they had to take him. The most terrifying part was hearing "we don't have a lot of time" and not knowing what that meant for my baby's survival. I can still remember seeing his head - it was massive, purple, and had an area the size of a silver dollar where skin was missing, showing concerning colors of green, yellow, and red.
My husband went with our son while I stayed behind, feeling more alone than I ever had. We soon learned the full extent of his condition - the spot where skin and bone were missing exposed his brain, with only the protective dura mater keeping it safe. During labor, the doctors had actually been touching his brain during cervical checks, not realizing what they were feeling. The severity of his condition meant we needed immediate transfer to Johns Hopkins All Children's Hospital.
What followed was two weeks in the NICU at Johns Hopkins. Instead of being home with my newborn, I was pumping milk in a Ronald McDonald House room, living out of suitcases, and trying to process this new reality. The simple act of washing my hands became an anxiety-inducing ritual - scrubbing while thinking about how I might have something on me that could harm my baby. The isolation was overwhelming. Even shower time became moments of intense emotion, feeling like I was the only person who had ever experienced this, despite my husband being in the next room going through it too.
Today, my son is four months old and doing amazingly well. While we still have a journey ahead with potential bone and skin grafts as he grows, he's meeting all his developmental milestones and is the happiest, most energetic baby. His squeals of joy (we call him "squeals on wheels") remind me daily of how blessed we are. Yes, I still have intrusive thoughts - worrying about him bumping his head or having accidents - but I'm learning to balance protection with letting him develop normally.
This experience has taught me so much about finding light in dark places. While no parent wants their child to face medical challenges, our journey has made my husband and me stronger as a couple and as parents. We've learned to give ourselves grace, be vulnerable with each other, and find joy in every small victory. It's also given us perspective - while we face challenges, we've seen families dealing with even more severe situations, reminding us to be grateful for our blessings while acknowledging the complicated feelings of guilt that come with that gratitude.
The medical costs have been staggering - just our initial four-hour NICU stay was $50,000 - but we've been touched by the kindness of organizations like Ronald McDonald House that helped us through our darkest days. Their support allowed us to focus on our son's care rather than worrying about where we would stay.
To other parents facing similar challenges - you're not alone. While it may feel isolating, especially in those early NICU days, there is hope and strength to be found. Build your support system, take care of yourself, and remember that it's okay to not be okay sometimes. Most importantly, celebrate every milestone, no matter how small.
Our story isn't over - we still have surgeries ahead and ongoing care to manage. But I'm sharing our journey in hopes that it might help another family facing similar challenges. We've learned that sometimes the most unexpected journeys lead to the most beautiful destinations, and that finding the good in difficult situations can be both healing and transformative.
- Megan
