This story was bravely shared by patient Rachelle Hart, in honor of SIDS, Pregnancy and Infant Loss Awareness Month, and in loving memory of her precious daughter, Jaymee.
I found out I was pregnant on Valentine’s Day.
Everything was horrible in the beginning. I was violently ill, couldn’t keep anything down and had terrible abdominal cramping. It was pretty tough. I had never experienced anything like that before. I mean I couldn’t even keep water down! I was never that sick with my daughter, Lily. But they say every pregnancy is different. I’d only made it all the way through to the end one other time.
Before I got pregnant with Lily, I had a miscarriage the day before my husband, CJ, and I got married. I also had a miscarriage after I had Lily. Nobody investigated anything. Nobody questions. I would call and make an appointment, then call a couple weeks later and say, “Nevermind”. I wanted to give Lily a sibling so badly.
Then I got pregnant with Jaymee. I went in for my first ultrasound scan at Dr. Adair’s office. After, they had us wait in the lobby before eventually sending us up to a Maternal-Fetal Medicine specialist. It was April 11, the worst day of my life.
A second ultrasound confirmed the diagnosis, Anencephaly, a serious birth defect where the baby’s neural tube doesn’t close all the way, resulting in a lack of crucial brain development. I’d actually read a blog post from a woman whose daughter had Anencephaly just two months before. That was the only time I’d heard of the condition prior to that day. I immediately went back to that mother and how strong she was. And I knew in that moment I might have to be that strong, too.
The condition was fatal.
Of course our next step was crying, but I looked over at CJ and told him I wasn’t going to lose my baby without a fight. My husband’s a very religious man, so for him, it was a no-brainer to say let’s keep going. For me, it was a little harder, but I decided to make Jaymee’s life something better for others.
When we first met with the Maternal-Fetal Medicine team, I told them right away that we wanted to try and donate Jaymee’s organs. We put it out there so their team could do the research and orchestrate a possible neonatal organ donation. I was lying on the couch at home when I got the call saying our request was possible. It was like the skies had cleared and I knew exactly what needed to happen. I knew I was not going to give up.
People ask, and I tell them that knowing what I knew during my pregnancy, I still loved Jaymee as much as I did in the moment I discovered I was pregnant. Maybe even more. I love her even more now, after the fact. My feelings for her never wavered. The thoughts of myself did, because I didn’t know if I was doing the right thing. As a mom you want to protect your children from any pain, and I didn’t want to put her through anything discomfort. I definitely went through a big self-doubt period.
I had normal appointments but an ultrasound every time to check on her and make sure I was OK. I had double the bloodwork. I began taking antidepressants. I had severe postpartum depression with Lily, then got off of the medication so we could get pregnant. They cleared me to get back on the antidepressants to help me manage the journey ahead. The women in that office are amazing. Amazing. I was the first patient at Parkview to request neonatal organ donation and have it approved, so it was a new ballgame for everybody. They understood the sensitivity of the situation, and we all remained hopeful. Even if they weren’t hopeful, they did a good job of hiding it.
I was entirely miserable at the end. I had polyhydramnios (an excess of amniotic fluid) and at the most severe point was measuring 48 weeks when I was 36 weeks pregnant. It was my faith, of course, that got me through. Lots of praying. I knew there was a reason why I was chosen to do this. I wanted Jaymee’s legacy to be more than a tragedy, and I would have done anything to make it so. At night, she’d kick CJ and he’d poke her and they’d play. I wanted to give him as much time with her as possible. I wanted him to feel every kick.
The team laid out all of my options for delivery. We’d scheduled a C-section for October 9, but they basically said, “We think your body is going to give up. If it does, this is plan B.” They brought in a palliative care team to help me cope with everything that was about to happen and beyond. They gave me as much support as you can possibly imagine, almost like a family. They offered words of advice on how to make our time with our baby special. They honed in on my beliefs and the path that I was walking. They reinforced that my strength was going to help carry me through. They got to know me. They talked about Jaymee like she was right there. They made me feel comfortable and even more proud to be her mom.
Because of Jaymee, the palliative care team actually created new programs for those experiencing infant loss. By doing this, they helped me accomplish what I wanted to accomplish. Not just saving lives, but also helping those moms who don’t have time to prepare for what’s to come. For that mom who plans to bring her baby home and leaves grief-stricken. Now the palliative team knows this is where they need to be.
On September 22, I had an appointment. My husband and I walked into the room and the entire palliative care team was there. As was the Maternal-Fetal Medicine team, including the geneticist, Sarah. They told me that, in order to donate her liver, Jaymee would need to be delivered at a minimum of four pounds, seven to donate the rest of her organs. Because of her restricted caloric intake, she was at least a pound behind for this to happen. There was no way I could carry her to seven pounds. At this point, the team was more concerned with saving me.
My husband said, “We’re going to lose Jaymee. I’m not going to lose you, too.” I had pushed myself to the limit. I knew I was mentally strong enough, but my body was not. In that moment, we decided to move forward with an induction.
Sure, there are times I think, “If we would have tried to do the amniocentesis to relieve the excess fluid, could I have made it to the end?” But looking back I wouldn’t have changed my mind.
I was admitted for the induction on a Monday afternoon. I had an epidural and Pitocin, but after 20 hours of laboring, we discovered that the polyhydramnios made the medication ineffective. My stomach was so hard because it was so full of fluid, and the monitors weren’t working. The doctor tried to break my water to see if it would make difference, but it didn’t work.
My whole family was around me, laughing and playing cards. That night we tried a different medicine to help me progress, but the epidural started to wear off. I could feel everything. The anesthesiologists hit me with a booster, but it only lasted for four hours.
Around 2:30 p.m. that Wednesday, after another booster, I decided to try and take a quick nap. My husband told everybody to go home. As soon as he left the room, I went from seven to ten centimeters dilated. I was having a contraction and couldn’t move to hit the alarm on my bed, which was hidden in the sheets anyway. Eventually, I found the alarm. CJ was outside and saw a bunch of nurses flying into my room. I was in full-blown labor. “This is happening right now.” I thought, and at that point, I knew that my baby was going to die. I hadn’t acknowledged it the entire time but in that moment, when she was calling her own shots, I had to. And it was so hard.
Jaymee was born at 2:56 p.m. on Wednesday, September 27. I was so proud and I just wanted to see my girl. They cleaned her up and brought her over and laid her on my chest. I was so in love with her. Even through everything, I didn’t realize how much I loved her until that moment.
She lived for 52 minutes.
CJ held her. My mom was in the room when I delivered her. My family came in and everyone held her and just smiled. There was nothing but love; it was so joyous. There was no time to be sad, because she was holding onto my hand and she looked just like her big sister.
She stayed with us until 9 o’clock that night, so we were able to bond with her. I could just cuddle her and look at her feet and hands. I needed that. I couldn’t imagine not having that time with her. It made me so happy, even though she was already gone. She is a piece of my heart, and so precious.
I wouldn’t change it for the world. I would do it all over again to have another 52 minutes with her.
Jaymee taught me, and will hopefully teach others, to have faith in others and let people be there for you. That you’re stronger than you think. Part of this journey was knocking down that door for neonatal organ donation. She was the first one who was going to walk through that door, but in the end, she opened it and made it an option for other families. She made it possible for another baby’s journey to end with giving life to others. There’s joy in that. She could have saved at least five other children, but now, another little one will do that because we asked the hardest questions a parent can ask.
I would tell another mother going through what I went through that it’s not easy, but even though your baby will one day be gone, they never actually leave you. CJ and I are two of the most imperfect people in this world, and for us to make something so perfect, for God to pick us, to say there’s something special about her, that she gets to skip this miserable world, that makes me damn proud. Jaymee inspired me. I didn’t realize how strong I was. I could have given up, but I didn’t want to. And I’m so glad I didn’t.
A special thank you to Now I Lay Me Down to Sleep remembrance photography.
