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Entries in anencephaly (2)


Eliott's Birth Story

This is my part of Eliott's story:

Eliott was born at 9:27pm on March 18, 2013, the midwife Lauren doing the delivery. As he was born, his cord was clamped, then cut, and Lauren placed him in the blanket I was holding. I started to put him in the isolette… a habit… but then immediately said, “I’m going to hold him” and walked to the rocker and proceeded to hold him for the next hour, rocking him the whole time. 

When I got him, he was so warm from Meghann’s body and I held him close until the only warmth left to feel was my own. Then I held him closer, wanting to keep him warm. I looked at him, described his body to Meghann and Brian and they chose not to see him at the time. Meghann ended up not holding or looking at him, but Brian did see his body, from the neck down. No one but me saw the head, which, to me, looked like a bunny. Meghann said she wanted to think of him as a bunny, not as a deformed baby. I understood. Brian held his son after I’d been holding him a little over an hour. 

Before he did, I went and got a warm washcloth to clean Eliott of the little bit of blood there was on him. It felt ritualistic to me, bathing the dead. I gently washed his little arms, his back and then his long, thin legs. I wrapped him in the ultra-soft blue and brown blanket Meghann brought for him. He was ready for Brian to hold him. Brian sat on the end of Meghann’s bed, crying softly over his son. It was a tender and precious few moments. 

Then the Pastor and his wife came in… family friends… and then Brian’s mom and sister arrived and then Linda, Meghann’s “cousin” came in. As soon as everyone was assembled, the Pastor said some beautiful words about Eliott’s birth and death and how he would forever have an impact on us. After that, Linda continued with a lovely prayer, referencing Meghann’s grandmother who’d passed and whose name (Jacoba) was reflected in Eliott’s middle name of Jacob. Most of us cried through the lovely sentiments. 

After the prayer, the Pastor and his wife left, the rest of us spending time together, my holding Eliott again until I passed him off to Brian’s mom, so she could hold her grandson, too. 

It was a long time before Brian was ready to see his baby and when he did, I set Eliott up so you could see his body, but not anything from the neck up. His body was perfect; it was his head that wasn’t normal. Brian, Jenny (his sister) and Linda came in and I introduced them to the sweet baby. After a moment, I excused myself, as did Linda, so Brian and Jenny could have some time alone with the baby. Jenny came out, too, giving Brian some time with his son. 

After they were finished, I did the newborn procedures with Grace, the RN, in a room off the patient room. We weighed Eliott and he weighed 1.7 ounces and was 5 ¼ inches long. Very tiny. We did foot and handprints on a Memento Birth/Death Certificate and then Grace did a Plaster of Paris of his hands and feet. The whole time, I talked to him and let him know how loved he was and I moved him when he needed to be moved and did the footprints myself. I also got a thumbprint of Meghann and Brian on the paper. Their thumbprints were much bigger than Eliott’s feet. 

Grace gave Meghann and Brian many gifts from an organization that gives clothes and toys to grieving parents. Meghann decided on one knitted sock to put Eliott in before he left them and wrap him in a white blanket. Up until that point, I’d wrapped him in the beautiful brown and blue blanket Meghann had for him… soft as could be. Meghann and Brian also had a bracelet that had Eliott’s name as well as a little stuffed penguin that I kept wrapped in the blanket while we all held him. I had put the blanket he was born into away so we could take it. I also took the cord clamp he had on for awhile. Meghann’s keeping the bracelet, penguin and blanket as well. 

I left about 4 hours after the birth, leaving Meghann and Brian alone for the first time since we got there that morning. They were ready to be alone with Eliott and I was ready to go lay down.

It was a beautiful birth. I loved holding my grandson, looking at his bunny face and perfect body. It was such a privilege to be with him as long as I was able. 

I’m at peace today. Feeling better than in the last week. I will miss sweet Eliott, but am glad to have the experience behind us. It was something no mother should ever have to go through.


Eliott's Story

This is from my daughter Meghann: 

We are sad to share that we have lost our baby boy. He was born sleeping Monday, March 18 and weighed 1.7 ounces and was 5.25 inches long. We named him Eliott Jacob and feel blessed for the short time we had him.

What was supposed to be a fun ultrasound to find out the gender turned out to be quite stressful as the baby was not cooperating. We left the appointment knowing we were probably having a boy, but would need to come back in a week to confirm. The reality was, our baby had lots of problems. After talking with our midwife, seeing a maternal fetal medicine specialist for a level 2 ultrasound and talking with a genetic counselor, we learned that our baby likely had a chromosomal abnormality of trisomy 13 or trisomy 18. The physical signs of this were an omphalocele with the stomach and intestines growing outside the body and exencephaly with the brain growing outside the body because no skull developed. We could clearly see this on the ultrasound and almost didn't need someone to tell us that the brain abnormality was "not compatible with life."

We had no genetic testing done with this pregnancy or Gabriella's as we are Christians and knew in our hearts that termination was never an option for us. When we got the first phone call with bad news, we decided that night that we could handle whatever our baby had. We could definitely love a child with Down's Syndrome or one with physical abnormalities. We knew that no matter what, if our baby lived, he would be loved and well cared for.

The harsh reality was that our baby would not live. He had a 0% chance of being alive outside of my body. The specialist said my young, healthy body was keeping him alive when he normally would have been an early miscarriage. With his brain abnormality, there was no chance of him making it through labor and the birth canal alive. We were told that he may live a few more weeks or maybe even to 35 weeks. With my previous c-section and the need to induce labor to get him out regardless of whether we decided to end the pregnancy early or wait until he passed naturally, we chose sooner  rather than later because the risk to me increased with each passing week as my uterus grew. I was already 16 weeks by ultrasound calculations and 17 weeks by my last period. And if I made it to the third trimester, an induction wouldn't even be possible because of my c-section. We also wanted to minimize any pain for our precious angel and knew that prolonging his life would only bring more pain. What an impossible choice that no family should ever be faced with.

My induction started Monday morning with my first dose of Cytotec being inserted around 10 a.m. By noon I had an epidural because the contractions were already strong. My water broke around 3 p.m. and Eliott Jacob was born at 9:27 p.m. into my mom's arms. Our room was soon filled with his loving family who wanted to meet him and say goodbye.

In retrospect, I knew something was a bit off the whole pregnancy. I had an odd sense of hesitation when it came to sharing the news, but with Gabriella I wanted to shout it from the rooftops at 5 weeks. Our dating ultrasound pushed our due date back a week but I knew when we got pregnant and got a positive test before it would have been possible based on the new date. I also wasn't showing at all. Nothing more than a tiny bit of bloat. I could still zip and button my size 6 skinny jeans. The bad news was devastating, but almost not a surprise. I guess a mother's intuition is right.

We decided not to do an amnio or any other testing while Eliott was still alive as the results wouldn't have changed the fact that his brain abnormality was fatal and that we would still try for more children in the future. We did send my amniotic fluid and placenta to be tested and will likely get results in about a week that will tell us if there was a chromosomal problem.

We know our family is not complete, and we will try again eventually- maybe when Gabriella decides to wean as I'd rather not be nursing and pregnant again. This whole experience has been surreal. It is something I never would have imagined as a possibility in my life. But I have faith that we are coming out from this storm stronger than we entered and know that we will be just fine. The love and support from my amazing husband, our care providers, family, friends and total strangers swells my heart with joy.