The gift of Hannah: carrying and birthing a baby with a fatal genetic disorder (guest post)

I asked my friend Christine if she’d share the story of Hannah, her second daughter, with us. When she was pregnant with Hannah I wasn’t even thinking of kids yet and didn’t have a clue. Over the years (and especially when I was carrying my own pregnancies) I’ve thought a lot about what she went through, and always wanted to ask her more about what her experience had been like. I’m so grateful she shared her story with us, and so, so impressed with her bravery and grace.

I’m the mother of three girls. Each is different, challenging, and a blessing in their own way. But when people ask about my kids, I most often reply that I only have two daughters — it’s easier than trying to explain to people that while I am the mother of three daughters, I’ve only been able to keep two.

My middle, Hannah Marie, was diagnosed at 22 weeks in-utero with a fatal genetic disorder called Osteogenesis Imperfecta, Type II — commonly known as Brittle Bone Disease. At a routine ultrasound, we discovered that she was very small, had a lot of extra fluid in and around her body, and that her bone measurements were well below normal. After much time spent with specialists, a clinical yet caring neonatologist told us the awful truth: while Hannah was fine inside of me, the disease would prevent her lungs from developing and she wouldn’t sustain life outside of the womb.

Funny thing about bad news – it takes a while to sink in. I remember wandering the halls of Children’s Hospitals in what felt like a bubble where you can’t focus or hear everything around you. I was shocked to see people doing normal things — how can you eat your lunch? My baby is going to die. My daughter is dying even now.

Because we were still relatively early in the pregnancy, the doctors gave us options — we could choose to induce labor early, or carry her for as long as we’d like. Most brittle babies survive to their due date with a relatively small amount of pain or discomfort. We talked long and hard about what to do, read literature on what happens to these babies during their gestation, and read a beautiful book called Waiting with Gabriel about meeting and providing comfort care to babies that have fatal diagnoses. We decided to wait for her — allow her to grow as much as she was able, and to love her every last minute that we got to have her.

So, we embarked on a journey with our sweet, broken baby. We were joined by our families, who loved us and grieved with us; by our amazing friends, who showed love and support at every turn, alternately crying with us and cooking us meals; by the amazing grief support network at the hospital and, in spirit, every other parent who has suffered this terrible loss. We experienced moments of grace and peace that I can’t explain — and that would never have been possible in our life without the gift that was Hannah.

Our number one goal for this journey was to meet our baby girl and have time with her before she died. In order to achieve that, the doctors told us we wouldn’t be able to have a vaginal delivery, and asked us to schedule a c-section date. Logically, I understood that she wouldn’t survive a vaginal delivery, but being asked to schedule the date of your child’s birth and death was awful. Horrifying. We put it off, we hemmed and hawed, and finally, chose an arbitrary date two weeks before her due date.

In her final gift to us, Hannah Marie chose her own birthday — my water broke on a sweltering July 6 afternoon. We rushed to the hospital, called our family and friends, and waited to meet her. I was left by myself for a few hours before she was born, while Anthony made arrangements, the nurses prepped and the doctors were called.

In those two hours, I told my beautiful girl how excited I was to meet her; I thanked her for choosing her own time; I told her I was sorry that I couldn’t keep her safe anymore; I promised her we’d tell Maddie all about her; I told her that she wouldn’t hurt anymore, that she was going to be whole, and beautiful, and loved by God; I told her I’d always always always be her mom and I was so proud of that. In those hours, I was given the amazing gift of saying goodbye to my girl all by myself.

Hannah was born at 5:52 p.m. and died at 7:32 p.m.

family

She blinked, cried, coughed, and looked around.

She was unbelievably beautiful.

hannahShe had her sister’s nose (which is mine), her dad’s mouth, and her own sparkling eyes.

The greatest privilege of my life was to meet her, see her, hold her, kiss her, and let her go.

hannah and her mom

The physical aftermath of losing her included recovering from a c-section and having my milk come in without the distraction of a new baby. I put myself on antidepressants to combat the double-whammy of grief and postpartum depression. I threw myself into caring for Maddie and helping her through her own three-year old grief. I took 1.5 months off of work, but found myself looking for a distraction so went back sooner. It was hazy — I remember bits and pieces of those months, but we were always cared for by our friends and family, and found our way back to a normal, Hannah-less life soon enough.

We had a lovely memorial service for her — it was important to me that we mark that she was born. That we tell people who didn’t get to meet her that she was here, she lived, and she was beautiful. Hundreds of friends, family, co-workers and “people who heard” joined us to celebrate the sweet short life of our girl. It was another of those many moments of grace.

maddie and nora

Maddie and her little sister Nora know they have a sister who lives in heaven. We celebrate her birthday every year by making cards, buying balloons and flowers, and visiting her little gravesite a few miles from our home. I mark it personally by opening the cedar chest filled with memories — pictures, locks of hair, little blankets I’ve never washed — and thanking God for the chance to be her mom.

I am the mother of three girls. And I am blessed.

mother of three girls

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