Having a Baby after CDH
Before my husband and I had ever heard of CDH, we knew we wanted a large family. We had dreams of a loud, crazy house, and eventually, large family get-togethers with lots of grandkids. When we got pregnant with our first child, we were so excited to finally start our family and pursue our dream. However, at 28 weeks, a CDH diagnosis rocked our world. Doctor appointments, hospitalizations, repeat surgeries, therapy, medical debt, exhaustion, and fear left us wondering how we could ever do this again. But at the same time, we loved our daughter and wanted to give her everything life has to offer, siblings included! We also didn’t want CDH to dictate our lives. We didn’t want fear to keep us from growing our family and making our dream a reality.
We talked to our daughter’s surgeon and learned that if her CDH wasn’t genetic, we had about a 2% chance of it occurring again. Two percent seemed high, but ultimately after looking into Makenna’s beautiful brown eyes, so full of life, we knew what we needed to do. She is so amazing and brings us so much joy, that we knew we could do CDH again if the result was this incredible.
We decided that even if we had another CDH baby, we would be okay. This time we would have a CDH community of friends there for us. We’d have Tiny Hero and other charities supporting us, we’d have a top CDH surgeon on speed dial to save our baby’s life, and ultimately, just like with our first, our love was unconditional, but this time we knew how to fight the CDH fight!
After finding out we were expecting our second child, we were immediately referred to high-risk. We held our breath through each appointment, nervous for what they may say. We hoped for only good news, but we were still cautiously optimistic even when we got it. Pregnancy after CDH was hard. We worried a lot and questioned everything. Things going well seemed too good to be true, but at the same time, we felt so grateful for every promising appointment. Our baby made the future seem so bright. We decided to name her Alaina (Lainey), which meant shining light, and we knew that no matter what, CDH or not, she was meant to be our baby. She was exactly what our family needed.
The day she was born was scary and amazing. We hoped and prayed for no surprises, and much to our surprise, there weren’t any. She gave us so many experiences we didn’t know we longed for and immediately relieved so much of our PTSD. Holding our baby, skin to skin, nursing her, and bringing home our newborn was all so healing. And then it happened. Our CDH miracle saw her sister for the first time, with a huge smile on her face, and we knew at that moment that we were right: that little life was exactly what she needed.
In the months to follow, Lainey taught Makenna, who was significantly delayed and just learning to walk, how to do so many things. As Lainey got older, she clapped for her, she kept Makenna company as we were hiding from germs all winter, kissed her boo-boos, and loved her unconditionally. Lainey became her sister’s therapist, her nurse, her best friend, and the best decision we have ever made.
And if she had CDH? It wouldn’t have changed our love for her. She would still be our little Lainey bug, but with matching a scar to her sister and a really cool story to tell. The decision to have a baby after CDH isn’t easy. There are pros and cons. There are risks. But ultimately, there are also rewards. My advice to families facing the decision about whether or not to grow their family is this - stay positive and don’t let the fear of CDH keep you from pursuing your dreams and growing your family. There is a 2% chance it may happen, and if it does, there are doctors with over 90% survival. There is hope!
Oh and did I mention she now has a little brother too??
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