Abigail : Everything Will Be Alright

May is Anencephaly Awareness Month

Marcy Judd
Mommy to Abigail
Anencephaly
October 2022

We started trying to get pregnant with our second child in January 2021. We knew we’d probably need medical help as it had taken two rounds of fertility treatments to get pregnant the first time, but we naively hoped we could get pregnant on our own this time. We tried naturally for eight cycles before asking for help in September 2021. After three failed rounds of clomid on increased dosages, we were referred to a reproductive endocrinologist. Preliminary testing showed Michael had a low sperm count and I had occasional weak ovulation. However, we naturally got pregnant in January 2022 while waiting for a consult to come up with a plan for more treatment. We were thrilled!!!

We were having a miracle baby and we let everyone know. So many people had been praying for us. We started talking to our almost 2-year-old son about being a big brother, bought him a baby doll, and started reading books with him. We told him the baby wouldn’t come “until after we go to the pumpkin patch this year.” We were so happy because what we had wanted most was a little sibling for our son to grow up with – one he was close in age to so he could barely even remember being an only child.

The beginning of my pregnancy went normally for me. I struggle with hyperemesis gravidarum (frequent vomiting) when pregnant but since this was my second rodeo, we made sure I got on appropriate medications as soon as possible. I felt even more sick than I had the first time, but it was controlled, and I was so relieved and happy to be pregnant. I was praying we’d have a girl this time. There hadn’t been a girl born into my husband’s family in 32 years.

Our son turned two and then a little over a week later, the day after Mother’s Day in May 2022, I went to the doctor for a routine prenatal visit. The nurse couldn’t find my baby’s heartbeat with the Doppler so she sent me to the waiting room while she got me on the schedule for a surprise ultrasound. I didn’t wait long before I wheeled my 2-year-old into the cramped little patient room and hopped up on the table. The sonographer immediately found a strong healthy heartbeat and I was so relieved. But then she kept looking around and eventually said she needed to ask the doctor if there was anything else to look at before she let me go. She left the room and was gone a long time.

I felt the need to comfort my son even though he wasn’t fussing and tried to think of a song to sing but oddly enough all I could think of was “Kumbaya” – so I started singing it. It translates to “Lord, come by here, someone needs you.”

The sonographer returned with my doctor and they started the scan again and were saying things to each other: “show me” and “yes I see.” I finally asked “What are we seeing?” The screen froze on a picture of my baby’s head. The eyes looked wrong. Like a frog. They ushered me into the closest exam room while I adjusted my clothes and the sonographer apologized to for lying to me. I wheeled my son’s stroller into the room and the doctor fell into the room and landed on a rolling chair, all flustered. She said it looks like my baby had a neural tube defect and if she’s right it means my baby is “not compatible with life.”

She talked about further testing and referring me to some MFM team downtown and how even if she was wrong they’d be the best people to help us. I called my husband and was so confused and afraid I just started sobbing while he tried to figure out what was wrong. He was on his way very quickly. As I drove away from that appointment, 16 weeks pregnant, my baby’s song came on the radio. “Everything will be alright. The whole world’s in His hands. The whole world’s in His hands.” It became my baby’s song back in January before I knew I was pregnant. I thought God had given it to me to comfort me through the infertility journey. I realized it was something much worse now that we’d received life-threatening news.

That week was the worst of my life as we waited between the initial bad news and the confirmation ultrasound one week later. We found out the day I turned 17 weeks pregnant: yes, our baby has a neural tube defect called anencephaly. And it’s a girl. Our beautiful girl. We named her Abigail Esme – Father’s Joy and Loved.

We chose to protect our daughter’s life, cherish every day we had with her, and try to be the best parents we possibly could to her for the rest of the pregnancy. The following 5 months were a huge battle of faith and fear for us as the team of 14 doctors and their medical students and nurses who cared for us continually took turns telling us our daughter would never make it full term, would die in utero, and would be a stillborn baby.

But after a couple months of hard mourning, something changed for me. I had hope again. We had dinner with my best friend’s parents. They had lost a baby to trisomy 18 so many years ago. And as they talked with us, it was like light reentered my life. They have a beautiful family. I’ve always admired their family. And I’ve always known about their son who they lost one month after birth – my friend’s little brother. Yet life continues on for them. They had another baby afterwards. And their family, as I said, is beautiful. I began to think, if this is a cost of being a family like theirs, it really will be okay. We will smile and laugh again. There will be beauty in our family again. This isn’t the end of our marriage or our journey to more children.

Time kept moving and I stayed pregnant. They kept telling me “Abigail is stable for now” but followed up with more warnings that she would die in utero. Instead, we made it full term. And at 39 weeks and 4 days, I went into labor naturally (another thing they said couldn’t happen!). I’d been fighting to not let them induce me because to me her life inside my womb was just as valuable as outside the womb, and I knew that the moment she was born, if she was born alive, she would start to die.

I had decided I needed to try to do it naturally if I could. I believe that labor can progress easier and more quickly without interventions if I can stay moving and changing positions. I also needed to be fully alert and aware to enjoy every second I might get with her. And I wanted to do the birthing thing together. Me and her. So I was determined to try.

The hospital filled with friends and family. About 20 people slowly showed up, confusing the security guards and dominating the waiting room. And in my labor/delivery room, we partied it up. We played Five Crowns and listened to loud gospel music and told stories and laughed and cried. I used a birthing ball, went on a walk, and used the tub for transitional labor. They told me it was safe to push but I wasn’t ready so we waited for my body to tell me when it was time. Then at 9:13 pm I suddenly felt her deciding it was time. I was suddenly afraid again – what if after all this time this is the moment I lose her? Right before I get to finally meet her?? But I couldn’t hold her in – I actually tried! But my water broke and at 9:15 pm, she was here.

At first we didn’t know if she was alive. She made no noise and her body was so still. It was startling because she was so incredibly active in the womb and had just kicked me in the ribs – hard – two minutes before she was born. But then the doctor felt her heartbeat. 80 bpm, and my husband handed her off to me. She was alive.

We had the most awkward walk of my life from the hospital bathroom (where she was born in the doorway) to the hospital bed. We’d insisted on delayed cord clamping and I hadn’t delivered the placenta. But we think it really helped her. Because for the next hour and 14 minutes, she stayed with us. Her whole body was dedicated to dying at this point so we never heard her voice and she didn’t move her arms or legs again. Her little tongue was sticking out though and my husband could see it move as she breathed easy. I could see her eyes moving and felt her make eye contact with me.

We kept her to ourselves for the first 20 minutes. Then her big brother came in to meet her for the next 20 minutes. Then we invited everyone in. The room was packed, and we had a baby dedication service right there in the hospital with a giant group of friends from church and lots of family. Two of our friends had just boarded a flight in the UK that morning and we’re bleary eyed and jet lagged but they were there. They’d brought a quaich – a Scottish ceremonial dish – which we poured anointing oil into. The oil was from a friend who is a pastor in Florida. He’d been by to visit in between flights for just a brief moment to give it to us just weeks before. Our pastor, who was supposed to leave the next week to defend his dissertation, was there to anoint us. He led us through some vows and read Psalm 139. Abigail’s godparents were there all the way from Kansas City, Kansas. They’d pulled into the parking garage just as Abigail was born. Her godfather read the most heartbreaking and beautiful letter over her. I anointed and simply blessed her as best as I could manage too: “You are my daughter whom I love.” There wasn’t a dry eye in the room. And then we all sang Happy Birthday before I subtly asked a doctor to shoo everyone out for some privacy. We sent them to the waiting room with tons of cupcakes from Jilly’s and told them to have a birthday party for Abby. The nurses at the nurse’s station were inundated with sugar too.

In our room with some privacy again, I delivered the placenta and we had Abby’s pediatric checkup. She was still alive and looked quite comfortable. She was 3 pounds, 11 ounces and 16.5 inches long (we joked that was pretty good considering she was missing several inches off the top!). Then we had our son come back in to say goodnight and goodbye to her before going home with our friends. He had warmed up to her by that time and we had the sweetest moment as a family of four, all cuddled on my hospital bed. He told her about his day, about seeing cats and trucks. He pointed out everything he could see on her and asked to hold her hand.

And at some point, while we were all enjoying each other, Abigail peacefully slipped into the arms of Jesus. Theodore headed home and we noticed Abigail’s color changing. We summoned a doctor and received the news we had lost her heartbeat. We cried then. But not for very long. So many prayers had been answered and we had received more time than we had hoped for. It was enough. And the joy and peace the Lord filled our room with was palpable. We literally felt like we were on holy ground. We couldn’t see angels, but we felt them and later several people unprompted said the same. Jesus and His angels had come to personally collect our little girl and we knew we had been a part of something holy and magical.

We made impressions of her hands and feet and ate our own cupcakes. We did some memory making activities, including putting on our mother/daughter bracelets. And we had a cooling cot brought in for her to “sleep” in next to us.

The next morning, Michael took two friends with him and he dug her grave in Bellefontaine Cemetery. I was discharged with Abby in my arms. We brought her home and laid her in our cradle with ice packs under her great-grandma’s handmade quilt to keep her cool. On Sunday we went to church. Then while my son was napping and my husband and his family and friends were sitting vigil out on the front porch, me and two of my friends turned our home into a sanctuary. We played Scripture Lullabies (called “Hidden in my Heart”), warmed up water for a bath, and gave Abigail a rose petal bath. I trimmed her nails and dressed her in pajamas. Then I took her back to the little nursery I’d made for her in a corner of our bedroom and read to her, prayed over her, and generally just talked to her. Michael came in and had a last moment with her as well. Theodore woke up from his nap and he asked to hold her, so we let him. Then it was time to go so I wrapped her in her shroud and we left for the cemetery. There we buried her communally with wildflowers and dirt. I liked to compare her to a wildflower after May’s diagnosis when I saw the quote “In a field of roses, she’s a wildflower.” It was the most beautiful and sacred weekend of my entire life.

It is now a year and a half later and I am holding our newborn rainbow baby. We did fertility treatments for this baby too, and we had just given up and decided the stress had become too much when three mornings later I found out the last treatment worked! Carrying a rainbow baby after the loss we have experienced was anything but easy, but I am so pleased to report Abigail’s little sister is perfectly healthy.

We have a life ahead. Going on family vacations together, building blanket forts, watching our favorite movies, complaining about all the silly things families with two children get to complain about. And keeping Abigail as a part of our family by celebrating her birthday every year just with our small little family.

I had a beautiful but really hard conversation with Theodore. He remembers Abby and misses her. He keeps asking to go dig her back up so he can bring her home and hold her again. The grief from losing Abby is still so close for his little heart.

Having maternity pictures/family pictures done through On Angels’ Wings was very important to me. Because although you can’t see her face, she is alive in there. Babies in the womb aren’t dying – they are living and growing and safe surrounded by their mother’s love in every way possible. I look at those pictures and despite what any stranger passing me on the street might say today, I can say “We are a family of five.”

I asked someone I know personally to take a few pictures during Abigail’s birth because I’m a very modest and private person. But do the maternity pictures. Make a good memory with your child in the womb. You will look back on those pictures and smile and remember when your baby was happy and safe with you.

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