“Matrescence” describes a person’s transition into parenthood. It’s a time of growth, learning, and celebrating the birth of your healthy baby. But what happens when the matrescence you dreamed of isn’t your reality? What happens when your newborn isn’t healthy? The postpartum months are already challenging, and when you add the stress of caring for a newborn with special needs, the weight can be crushing. I know because I’ve lived it. I’ve learned that parenting a child with special medical needs requires support, and that’s why I’ve chosen to take my experiences and use them to help serve other parents through my work as a doula. Over the last two years, I’ve experienced deep pain intermingled with incredible joy and a newfound ability to give back to those who walk the path after me. My matrescence has been a gift that I didn’t know I needed, and I love sharing that gift with others.
In 2016, I became pregnant with twins after about a year of IVF treatments. I remember breathing a sigh of relief. Getting and staying pregnant is the “finish line” of fertility treatment, and my twins and I had made it. In my mind, we were safe. I rode this high through the first 19 weeks of pregnancy, and then came the 20-week anatomy scan. Carrying twins meant that I had more ultrasounds than during a typical pregnancy, but I had been really looking forward to this one. With my first daughter, this scan had been a traumatic appointment that came at the end of a month-long bedrest. This time around, I was ready for a happy visit where I’d get confirmation that the babies were healthy, find out their sexes, and give them names. But that’s not what happened.
The ultrasound tech spent much more time focusing on “twin A” and her heart. I could tell that something was wrong, because she breezed right through the scan of “twin B” and went back to spend some more time on “twin A.” When the high-risk OBGYN came into the room, my heart sank. My daughter was given the complex diagnosis of hypoplastic right heart syndrome— essentially half of her heart was missing. This meant that without open-heart surgery she would die within weeks of birth. Immediately, appointments were made with a pediatric cardiologist, and then my husband I were whisked through the back office door in tears. Our focus changed in the blink of an eye, and we entered survival mode. We learned about mortality rates and surgeries (she’d need three before age five) and met other families in similar situations. We gained strength from these families’ success stories and mourned with those who had suffered devastating losses. At 37 weeks’ gestation, my twins were born via planned cesarean section. In the operating room, each baby had her own NICU team waiting for her arrival. I was strapped onto the operating table, having a total out-of-body experience and absolutely terrified. Would my brain let me love someone who was so fragile, a baby who may never come home? June, “twin A,” was born at five pounds, four ounces.
June had her first open-heart surgery at just two weeks old and was on life support for days afterward. She came home 41 days after birth. She had her second open-heart surgery at five months old and sailed through her recovery in just a week. The months between the two surgeries were full of weight checks, feeding tubes, oxygen monitors, and wondering if life could ever feel good again. Not only was I taking care of two newborns and a toddler, but everyone else seemed to have moved on with their lives. Didn’t they see that I was drowning? I wish I’d known about postpartum doulas when the twins were young—I thought doulas were only for birthing babies. What I needed was someone to come in and care for me, to nurture me and meet me exactly where I was in my matrescence. I needed someone who wasn’t going through the same traumas and transitional growing pains as me, and now I know that a postpartum doula would have filled that role beautifully.
Eventually life began to settle into a new normal. June’s personality started to shine through, and we’ve been given the incredible honor of seeing her grow up and thrive. She’s two years old now and the date of her third heart surgery is quickly approaching. Along the way, our family has gotten to know many other children with heart conditions who haven’t made it. I have a list in my phone of 14 children who have lost their lives to heart defects. I stop and remember how lucky we are to still have her with us every single day, and I know that one day it could be her loss that we’re mourning.
Settling into my role as a mother of a child with special needs has been a slow process. There’s a lot to work through, and I don’t think that my matrescence will ever really be over. Over the last two years I searched for ways to find purpose in this pain, finally finding it by becoming a birth and postpartum doula and helping other parents become empowered advocates for their families. I provide care for all birthing parents but place special focus on families who’ve received a life-limiting prenatal diagnosis for their child. I make postpartum visits in the hospital if that’s where a child is living for the first few weeks or months of their life. I help parents make the hospital feel like their child’s special place and supporting them as they learn how to help care for their child while they’re still in the hospital.
I remember being so afraid to touch my daughter while she was hooked up to her various wires and IV lines. Nurses don’t usually have time to nurture and educate the parents, or ask them how they’re bonding with their newborn, because they’re so busy just keeping their patient alive. I’m here to help bridge that gap and make sure that parents are being supported in their new role, no matter where they spend their first few months after birth or adoption.
I also offer “first day home” services, where I help families make the transition from hospital to home after being discharged. I wish I’d had this kind of support when we brought our daughter home! I didn’t know the simple skills I’d need to succeed in my new role as a “medical mama” and love being able to help bring the knowledge I’ve gained and the resources I have to these families. I’m also planning to enroll in bereavement doula classes, because loss is an unfortunate outcome for some families who give birth to these special babies, and they need support through their grief journey too.
It takes a strong support system to help a new parent thrive, and it’s an honor to be a part of a family’s care team. Before I had my twins, I thought that the only truly successful birth experience was one where all of the outcomes were positive. Now I know that beauty also exists in the struggles and the triumphs, in finding strength in the darkness, and using that strength to help support and make space for other families who need it.