By Amy Suson
Youll likely never have children. I had heard those words repeatedly growing up. Being born with severe tricuspid valve stenosis, transposition of the great arteries, hypoplastic right ventricle, VSD, and left ventricular systolic dysfunction, I really was not too surprised. I knew I was blessed enough to have had only two heart surgeries in my lifetime with no complications. As a child, I was able to do most everything that my friends were doing. I never felt left out or restricted with my CHD, but as I became an adult and got married, growing a family was something that I did desire. After several conversations with my cardiologist, who specializes in adults with congenital defects, he told me that IVF with a gestational carrier would be a safe way for my husband and me to have children.
At that time, I was in my early 30s, and once I started researching IVF and surrogacy I discovered that it might be more challenging than I expected. I had the battle of my age, egg quality and financing all against me. Luckily, my sister-in-law volunteered to be my carrier. After two rounds of IVF, we only had two embryos. My husband and I decided not to do any genetic testing on our embryos and in March of 2018 we transferred both of them to my sister-in-law. Two weeks later, my SIL took a home pregnancy test and it came back negative. We were devastated.
The day following her failed test she went in for blood work to confirm the negative test, but to our surprise, the nurse called us back and said she was pregnant after all. Talk about shocked, we were in disbelief and cried together on the phone. At our first ultrasound appointment, the baby was small and not growing appropriately. Our doctor told us that there was a 50 percent chance that a miscarriage would occur. Once again, a negative report turned positive and at our next visit, the baby was growing just as he/she should be.
Finally, the time came to find out the gender of our baby and to have an anatomy scan to make sure all was well with the baby. We were so excited to find out that we were having a baby girl. For our anatomy scan, we were seen by a high risk doctor due to our IVF journey and since I have a heart defect. The likelihood of the baby having a heart defect increased by 1 percent with IVF and again by 4 percent because of my CHD. I really did not think twice about it because that was only a 5 percent chance that my daughter would have CHD, too, and a 95 percent chance she would not. Right away, the specialist OB-GYN noticed that there was something wrong with her heart. It looked as though she had a defect with her arteries. My sister-in-law and I journeyed to Cook Childrens Hospital for three fetal echocardiograms to find out more answers about my daughters heart. No definite diagnosis was given due to my little girls dislike of the echocardiogram wand. She never seemed to cooperate with the technician, so we moved forward and planned a C-section, met with the heart surgeon and prayed that the delivery would go well.
On Nov. 12 of last year, feisty little Madilyn was born and immediately taken to Cook Childrens. We had a great team waiting for us there, and my cardiologist ordered Madilyns echo and diagnosed her with pulmonary atresia and a VSD. Three days after birth, Maddie had her BT shunt and six months later her final heart repair surgery.
She is an amazing little girl, and just like Mommy has become part of the zipper club. She and I now see my cardiologist, and this summer we will start our mommy/daughter yearly checkups together.
You never want your child to have to go through the pain and struggles that you have had to experience yourself, but I tell people Madilyn was created for and given to us for a reason. In our house, scars and heart checkups are considered normal. I hope as a mom with CHD, now with a daughter with CHD, that I can be an example to her that she can do anything she wants to do. Her heart condition makes her a stronger person, and it is to be celebrated, not feared. I always wanted a mini me, I just never expected us to be so much alike.
Like mother, like daughter heart warriors.
Amy Suson and her daughter Madilyn reside in Fort Worth, Texas, with her husband. Amy and Madilyn are both under the care of Cook Childrens Hospital. Amy is a school librarian and enjoys watching Madilyn grow and explore.
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