By Elisha Hill
Mommy to Kamiyah
Turner Syndrome, Congenital Heart Defect
2023
Kamiyah was my 6th pregnancy and, because of my age, we decided to do the NIPT testing in the first trimester of my pregnancy. We wanted to do a gender reveal, but unfortunately that wasn’t going to be possible, because my doctor called to tell me that the testing showed increased risk (73%) of turner syndrome, and this specific syndrome is female specific.
The expectations were that we were a high risk pregnancy and the likelihood that we would miscarry or have a stillbirth was very high, specific to turner syndrome. Her heart defect was not a concern, as it was able to be repaired after birth. I hoped I’d be able to carry her to term, without any fatal complications.
Induction was planned for March 31, 2023. On March 24th, I had my routine, weekly appointment with the high-risk doctor. I thought everything looked good, so I went to the hair salon. During my hair appointment, I received a call from the Springfield office that there were concerns with my earlier ultrasound, and St. Louis wanted me to go to their office immediately. I asked the high-risk nurse in St. Louis what I should plan for, as I had 6 other kids at home, and she said either plan to give birth or stay until I gave birth.
So, I had a lot to get figured out before I headed to St. Louis. I got to the labor and delivery and they were unable to find what Springfield did on the ultrasound. I asked the doctor since I was already there, and if it wasn’t dangerous for Kamiyah, could we induce labor, since I was going to be induced the following week anyway. Within a few minutes the doctor said he did have concerns and we were going to go ahead and have a baby.
I tried for some time to labor on my own. Kamiyah’s heart rate kept dropping, I wasn’t dilating, and every time I would be checked there was a lot of blood and concern with hemorrhaging. So, after a lot of tears and emotions I opted for a C-section. Nothing was expected or normal with her delivery and I did not like it at all. I was scared to death and went to the OR alone. I remember being told I have to put my arms down because I was trying to push the sheet away from my face. I remember hearing “ok we got to hurry” and asking for my husband. The next thing I recall is Kamiyah being next to me in her little bed and then she was taken to the NICU. I don’t remember anything for the next 24 hours.
Things changed with Kamiyah about 3-4 weeks after she was born. Kamiyah’s journey wasn’t the best for her. We rarely got to hold her. Her levels weren’t staying up and she was constantly receiving oxygen. She had a lot of procedures, tubes, pokes, and medicine. Too many surgeries, and a life on ECMO.
After Kamiyah’s first open heart surgery to fix the narrowing of the arch, she struggled coming off of bypass and had to be placed on ECMO. Five days later they tried to remove her ECMO, and she crashed and they performed CPR for 30 minutes. Kamiyah never recovered from the hit her heart took that day. Her systolic function eventually improved which was the early concern, but the diastolic function never got better and nothing would be able to make it better because Kamiyah needed a new heart.
During the time Kamiyah was with us, it was stressful, I had kids at home being cared for by my 17 year old son who went virtual with school to help us, and I had a baby in the NICU 3 hours away who, at 2 weeks old, I couldn’t even hold anymore. There was a lot of traveling back and forth. There were days we left home first thing in the morning, got to St. Louis for an appointment or visit, drove back home for our son’s baseball game, and turned around with all 8 of us and went back to St. Louis, all in the same day. I struggled with how to be a mom to the 6 at home and be near Kamiyah because, even though we had all hopes she was coming home, I didn’t know when something could happen. I didn’t know how to be everything for everyone.
Children’s Hospital denied her for a transplant because she had been on ECMO too long and they didn’t think she would make it through. My husband and I fought for her, networked as much as we could across the entire United States, and we finally found a hospital, thankfully in St. Louis, who would put her on the list. We were so happy that there was a chance.
Until there wasn’t. Kamiyah got a staph infection that got in in her blood, removing her as a candidate for a transplant. Her road had come to an end. None of this was planned, especially for my last baby. We decided on May 18th to start the bonding time and end of life with our baby girl. Kamiyah Koveleigh Hill passed away on May 19, 2023. Our baby girl lived 44 minutes on her own with no tubes, no wires and in her momma’s arms. After Kamiyah passed away at 55 days old, I had a lot of regrets for taking the time away from the hospital to take kids to the zoo, or museums, because I felt like I was robbed of so much with her.
Life goes on right, well that’s where we are at, I don’t get to grieve, I only get to cry my eyes out with thoughts, songs, and sadness. Anytime I see a baby I wonder if she is about the age Kamiyah would be. Our family talks about her all the time, her memory is still alive in our house, and I am hoping one day I can look at a butterfly, or the color purple, or listen to her funeral songs without a horrible ache in my chest. I hope one day I will be ok.
Kamiyah was supposed to be our last baby, she was a surprise, but everyday that passes and all the time I sit and think on the journey of Kamiyah I wonder: is that really how this is all going to end, the tragedy, the loss, the ache? So, if God and Kamiyah feel like I should have another child I guess I will.
On Angels’ Wings provided me maternity pictures, day after birth pictures, journey pictures, and end of life pictures. They respected all of my wishes and made this journey as normal as possible. OAW has been amazing, and I am very grateful for them, from the pictures, to the grief solutions, to them just being caring humans and here for us, all of us in the most horrible times of our lives. They provided me the chance to have family pictures with all 7 of my kids, when Kamiyah couldn’t even leave the hospital. This organization captured the only time Kamiyah ever got to be outside, be in the sun, hear the birds and feel the wind. Thank you On Angels” Wings we are very grateful for you, and you will always be family to the #staystrongkamiyah journey.
