By Katelyn Lee
Mommy to Harper Mae
CHD – Truncus Arteriosus
August 21 – October 17, 2022
(Scroll below to see the couple’s video story, as well as their update with their miracle rainbow baby born in 2024!)
My husband and I found out we were pregnant with our son in January of 2021. We spent January to May loving every minute and getting ready to welcome our son into the world. His due date was September 27th. In May I was hospitalized due to high blood pressure and swelling of my hands, feet and face. I was diagnosed with preeclampsia and continued to get worse as each day went on in the hospital. The day I thought I was going home my doctor listened to my lungs and heard something concerning. After an ultrasound and chest X-ray they had found pulmonary edema. They life flighted me to Barnes Jewish hospital where we were told we would have to deliver our son at only 22 weeks and 5 days. We held our boy and loved on him for the two and a half hours we got to spend with him before he went to heaven.
We had decided to wait awhile before trying for our rainbow baby. In January of 2022 I found out we were pregnant again! We were so excited to get our second chance of having a family. My pregnancy was hard and uncomfortable, but we were positive this was it. At our 18-week ultrasound we were told that our sweet baby girl was diagnosed with a congenital heart defect called Truncus Arteriosus. This affected her pulmonary artery and aorta. They never split in the early stages of development and were working as one. We were told she would need to have open heart surgery after birth, again when she turned 9 years old, and one last time when she became a young adult.
Our dream was to have a second chance of having a family. We were hopeful this would be it for us. We thought after losing our son there was no way we could lose another child. We were told the surgery fixes the defect and she would come home six weeks after surgery. It seemed easy enough, so we remained hopeful.
I was induced early at 36 weeks and 3 days due to my preeclampsia coming back. But when we started the induction I was dilated to a 3 already so we started pitocin. I was in labor for about 12 hours and it was time to push. I pushed for about ten minutes and our sweet Harper Mae was born.
Things changed when our girl went in for her first surgery at four days old and came back on ECMO, a machine that pumps and oxygenates the blood through the body to give the heart and lungs a rest. After that, they found a clot on the right side of her heart and narrowing of her aorta. So, at five days old, she went in for her second heart surgery.
When a patient is on ECMO they need to be on blood thinners to avoid the blood clotting and going to the brain or any other part of the body. They had found a brain bleed the night before her second surgery, and she needed to avoid going back on the ECMO machine after surgery. While she succeeded at this, only 16 hours later, she had to go back on the machine.
Over the next eight weeks our girl went through hell. She had five more surgeries, her kidneys stopped working and she was placed on dialysis, she needed a fasciotomy to save her arm and fingers, almost bled out in the OR, had an open chest for three weeks and had a massive amount of fluid overload on her body. She spent all of that time on ECMO as well.
On Angels’ Wings came into our story when we received Harper’s heart condition diagnosis. They provided maternity photos, photos of Harper in the hospital after her first surgery, and end of life photos of her. They gave us memories we’ll cherish for a lifetime. We have a limited amount of photos with our son Graham, and we wanted to make sure we had lots of pictures with Harper in case anything were to happen.
Our child fought for her life on multiple occasions. She endured so much for a newborn. She fought hard for 57 days. We lost our sweet Harper Mae on October 17th at 11:15am. She was just to tired to continue. The pain is unbelievable after losing our second child. We are taking one day at a time and enjoying the small moments as we can. We had a visitation and funeral for our girl and that was closure we needed to be able to move forward slowly.
We hope and pray we will have a baby we can raise. A baby to leave the hospital and to bring to our home, instead of a funeral home. We hope we can have our family complete.
