Congenital Heart Defects

Asher’s Heart

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Asher's Heart

Editor’s note: By special request of the author, this story is published exactly as it was submitted to us. We were crushed, devastated, horrified. The rug had been swept out from under us. In a matter of a few days, we had gone from excited to meet our little boy to hearing we may never meet him and on top of that, we had to make that impossible decision. By Jeannine April 29, 2021 was the worst day of my life. That previous Monday night, we had definitively felt our baby boy moving for the first time. My husband and I sat for several minutes, […]

Congenital Heart Defects

A Different Kind of Strength

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our baby had hygroma and hydrops

The doctor came in with a very sympathetic demeanor and started saying words like cystic hygroma and hydrops and fatal and miscarry and chromosomal issues. We completely lost it. “What do you mean?” I wanted to scream. I just saw a normal happy little moving baby on that screen a few minutes ago. By Jaclyn When our daughter was just 6 months old, we found out we were pregnant again. I’m not going to lie, I was horrified. I was still breastfeeding, trying to juggle being a new mom, working full time, and adjusting to marriage as a parent. Although I reminded myself daily how […]

Congenital Heart Defects

I almost canceled the nuchal translucency

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I almost cancelled the nuchal translucency

Typically, a nuchal translucency is performed between 11 and 13 weeks. Mine was late, at 13.5 weeks. The fact that the doctor wasn’t seeing what he should be seeing at this late stage alarmed me. By Morgan At my first ultrasound, I asked the technician, “Is there a heartbeat?” I breathed a big sigh of relief when she said yes. We had learned from the NIPT that we were expecting a little girl, and we had already come up with a name that we both thought might be a good fit. I almost canceled my nuchal translucency test My husband and I were working full-time from […]

Congenital Heart Defects

Letting Poppy Go

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HRHS - Letting Poppy Go - a hypoplastic right heart syndrome diagnosis

After days of crying, sleepless nights, and considering quality of life/life expectancy issues, we decided to let our baby boy with HRHS go. By Catt We found out we were having a baby boy late last year. Since I was 38 and wanted another child close in age to our first, this was the blessing we were praying for. We nicknamed the baby “Poppy.” Given my age, we went through all the testing: we did the MaterniT® 21, a nuchal translucency screening, and an amniocentesis. Everything came back normal. Then came time for our 20-week anatomy scan. Like my daughter, my son loved being on his tummy. Because […]

Congenital Heart Defects

Ethan’s Story

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Trisomy 21 - He said my baby would never be a special Olympian and would need immediate, emergency heart and bowel surgery. And that was if the baby made it to term.

God met me where I was. While He didn’t give me the miracle I had hoped for, the one I had prayed for, miracles came in other ways, through my friends, family, and the nurses and doctors taking care of me. By C.J. This is Ethan’s story–my youngest son. It started out much like I thought for a third pregnancy. I have two healthy children, a girl, age five, and a boy, age three. I was sick with morning/all day sickness. When you are that sick and you have been through it twice before, it is hard to be too excited, but my husband and […]

Congenital Heart Defects

Nova, our shining star

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By A.N. Pregnancy is supposed to be a joyous experience. With a history of two prior miscarriages, we waited until 13 weeks to begin to share the news with people beyond our immediate family. We never did an official announcement but word of mouth travels fast. After 13 weeks, anyone who was in our close circle of friends and family knew we were expecting a little girl. Our family was excited for the addition; my daughter was thrilled that she would have a sister. Nova was our baby’s unofficial name, our shining star. You have big dreams for your baby, before he or she ever graces this earth […]

Congenital Heart Defects

Compassion & Courage

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By Monica Palase I just read Kate’s story and it was amazing. My husband and I had our first son, CJ, on August 12,1991. He was born with HLHS. At that time, they were just starting the surgery to correct this and he underwent open heart surgery at 10 days old. We lost our precious angel on November 16, 1991. I was set on not having anymore children, but my CJ told me not to give up. I was told when I got pregnant again that I would have the option of aborting the pregnancy if this child had the same condition. It is not something […]

Congenital Heart Defects

Baby’s Boots

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By L. B. I am 21 weeks, two days pregnant and have decided to terminate my pregnancy. This is my first pregnancy. I had wanted to conceive for several years, but my husband was not ready. Then for Christmas this year, he surprised me with a pair of baby Timberland® boots. It was his signal to me that he was finally ready for fatherhood. The first time we tried to conceive, I got pregnant. I couldn’t believe how easy it was. I was nauseated and tired the first trimester, but nothing out of the ordinary. I am very athletic and continued running. During my eighth week of pregnancy I […]

Congenital Heart Defects

Remembering Dr. Tiller’s Kindness

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M. K. My story takes place in the year 2000. I was 32 years old and had two older boys from a previous relationship. Jason and I had been married three years and I was pregnant. We were excited and ready to be parents together for the first time. We had selected furniture, car seats, and other items to help us keep our baby comfortable, warm, protected and loved. I took prenatal vitamins, didn’t drink, had never smoked, and avoided sushi, artificial sweeteners, deli meats and cheeses. I had all the usual prenatal tests and everything was normal. Twenty-nine weeks into my pregnancy my OB said I was “carrying […]