Recipient Stories

By Emily RowdenMommy to Malcolm “Mac”Mitochondrial DiseaseAug 29, 2021 – March 2, 2022 We lost our daughter, Alice Ada, to stillbirth at 28 weeks in September of 2020. Malcolm (Mac) was our planned rainbow baby. Many families will understand the expectations of a rainbow baby. Their life and potential bring so much joy, comfort, and…

By Brooke RiddlespergerMommy to LincolnChronic Lung Disease / Bronchopulmonary DysplasiaBorn in November 2019 I had a super rough pregnancy, something was always wrong. I was in and out of triage. This night was different because I KNEW something was really bad, however I thought it might just be Braxton Hicks Contractions. Turns out I was…

By Taylor RobersonMommy to JacobTrisomy 10q2022-2023 When we first found out we were pregnant we were so excited. Then we went in for our anatomy scan and our world changed. Baby boy was measuring small and his heart did not look normal. We got an amniocentesis that confirmed his diagnosis of Trisomy 10q, which felt surreal.…

By Elisha HillMommy to KamiyahTurner Syndrome, Congenital Heart Defect2023 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…

By: Stephanie WeidknechtMommy to WyattLaryngomalacia TracheamalaciaBorn in February 2022 Wyatt was born a healthy full-term baby, or so we thought. Immediately after birth, he sounded like a dog toy, and I thought “that’s a cute quirk.” Occasionally I would worry that something was wrong with him, but the lack of concern from others often made…

Marcy JuddMommy to AbigailAnencephalyOctober 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…

By Mackenzie SlackMommy to CarolineAnencephalyFebruary 2023 Our journey began with the happiest August ever. The three of us (my husband, son, and I) were overjoyed to find out we were expecting. Our son was 3 when we found out we were expecting, and we were already stressed that there was such a large age gap…

I found out about Samuel’s pregnancy after I had experienced three losses before him. I had an older son and we had been trying to have another baby and had a miscarriage, ectopic pregnancy, then another miscarriage before finding out about Samuel. It was actually during my ectopic pregnancy that I decided my next son…

By Christine HunterMommy to HenryBorn August 2018Congenital Diaphragmatic Hernia5q14.3-5q15 Deletion, Bosch Boonstra Schaaf Optic Atrophy Syndrome, MEF2C Haploinsufficiency Syndrome, Cortical Visual Impairment, Infantile spasms (West Syndrome) My pregnancy with our first-born son, Henry David, was easy with zero concerns. We had an ultrasound at 10 weeks and 20 weeks which both showed no concerns. His growth was on track…

By Jackie HayMommy to BenjaminBorn April 2022Congenital Heart Defect – Hypoplastic Left Heart SyndromeTransplant Survivor In September 2021, we were surprised to learn that our family of three would soon be turning into a family of give! At our anatomy ultrasound in December 2021, we were told that Baby B had a “blip” on his heart.…