Heather, a woman who has Turner Syndrome, shares how she was able to successfully use IVF to start her family. The majority of females who have Turner Syndrome are unable to have children, and even if they can, pregnancy often presents a major risk to the life of the mother and the child. In Heather’s case, she was able to work with her health care team to navigate a healthy pregnancy and start a beautiful family. This is her perspective on the process. Please consult your health care team to determine what is best for you.
Diagnosed at 14 Years Old
At 14 years old, I heard the dreaded words, “You won’t ever be able to have children.”
I was diagnosed with Turner Syndrome after I tagged along to my little sister’s doctor’s appointment. A smart new dermatologist gave me one look and said, “I’m going to test you for something, if that’s OK.” Not even really registering what this simple blood test might mean, I found out that Friday evening that I had Turner Syndrome.
My family never made my diagnosis anything other than the medical issue that it was. I could have been bad at math or had issues with spatial distance while driving, even if I didn’t have Turner Syndrome! Now, being older, I think that outlook helped my emotional and social life. I was never made to feel like I was different or had any disability. I was also blessed with a great doctor at Children’s Mercy in Kansas City named Jill Jacobson. She was on the forefront of growth hormone treatment and hormone replacement therapy, which I know dramatically improved my quality of life.
Aspirations of Motherhood
For as long as I can remember, I knew that I wanted to be a mama. I always knew I would achieve that goal with God’s help–some way, some how. Once I met a fellow Turner Syndrome patient with a baby, and I couldn’t get to her quick enough to ask how she did it. I went on to find there were so many options for Turner Syndrome patients, including embryo adoption, egg donation, and IVF.
When I met my husband in 2014, I had to share my research on reproductive options with him. Picking the right partner who is able to support you is the best advice I can pass on. It is important to have support through the emotions that can come with infertility or Turner Syndrome in general. Self-advocacy is also essential. Some doctors will want to discount your chances in life, but as one of my favorite sayings goes, “Science only goes so far, and then there is God!”
After a year of marriage, in 2017, we began our IVF journey. To me, the preparation for IVF was a lot like the hormone replacement therapy I was already on for Turner Syndrome. It included estrogen and progesterone, just in larger doses, and the progesterone became daily shots instead of pills. After the first trimester, I was able to stop hormone replacement, since the placenta takes over for the rest of pregnancy. Six weeks postpartum, I returned to the hormone replacement regimen I was on before.
After our first IVF cycle, I got the news that I was pregnant. I was over the moon that we were being blessed beyond belief! Sadly, we lost that angel at six weeks, and I didn’t know whether I had the strength to go on. With my husband and family’s support, we tried again and got a positive pregnancy test. I immediately went to a high-risk pregnancy clinic, as any pregnancy with Turner Syndrome is automatically high-risk.
The care of the staff was wonderful. They provided extra sonograms and visits to check on all levels, from my thyroid to glucose levels, which was very helpful. For nine months, we worried every second and researched every test the doctors needed to do. Finally, we welcomed a perfect little boy named Landon Michael in 2018. I would encourage anyone starting this process to make sure you get all the necessary tests. This could include thyroid, autoimmune disease, and other things that might be related to Turner Syndrome and affect the pregnancy. I struggled with gestational diabetes, and that can be common for girls with Turner Syndrome, as well.
Before going through IVF, I was cleared by my cardiologist for any issues with my aorta that might make labor risky for me. He also saw me during every trimester of pregnancy to make sure everything was progressing safely. I also saw my reproductive endocrinologist to do hormone testing and ultrasounds, to make sure that my uterus was a viable candidate for transfer.
For women with Turner Syndrome wanting to undergo IVF, I would also recommend a blood test for any blood clotting disorder. My reproductive endocrinologist did this, and even though I had no positive test, she had me take baby aspirin during the transfer process to help with blood flow to the uterus during implantation. After I gave birth, the high-risk obstetrician had me do a follow-up with my regular obstetrician, similar to any normal postpartum patient. I also followed up with my cardiologist to check my aorta after childbirth.
Growing Her Family
When Landon was a year old, we decided to try IVF again, and again we were blessed with a positive test! All was going great until, at 14 weeks, my water broke. After many appointments in which we were told our baby boy wouldn’t make it, he kept proving the doctors wrong, week after week. At 27 weeks and after a month in the hospital, Lucas Aaron made his debut, just before Thanksgiving in 2019. He is a true miracle. I don’t know if Turner Syndrome had anything to do with my preterm labor, but I’m just thankful that he got here by the grace of God. He has a long road ahead, but he will continue to be our miracle.
The Joy of Being “Mama”
Overall, Turner Syndrome has helped me appreciate every part of my life more. I enjoy the things in daily life that I never knew if I would get to, like being called “mama.” I hope my story can give those who want to pursue this path to parenthood hope. It was not easy, but it was the most worthwhile journey of my life. I am always willing to talk more with any woman with Turner Syndrome wanting more information.
Heather’s journey shows that every woman who has Turner Syndrome will have a different experience. For some, infertility or health risks may be barriers to pregnancy, but there are many options to start a family! We hope you will follow the blog to learn more about these other options throughout the month. You can read about reproductive health in patients who have Turner Syndrome by clicking the button below.