The Turner Syndrome Foundation’s (TSF) My Story blog series highlights the experiences of individuals, families, and caregivers affected by Turner Syndrome (TS). Their stories have an incredible ability to inspire others and make a positive impact on the TS community. For many women with Turner Syndrome (TS), infertility is a devastating part of their condition. But there is not just one path to building a family, and everyone must choose the one that is best for them–even being okay with being childless. This month, we share the story of a woman with TS who chose IVF to fulfill her lifelong dream of becoming a mother.
Notes: This post contains sensitive information about infertility that may not be appropriate for younger audiences. Please use discretion. Everyone’s journey with TS is different. Please consult with your health care provider(s) for guidance regarding your unique health issues and appropriate treatments. TSF does not take a stance on medical treatments or provide medical advice.
National Infertility Awareness Week - April 23-29
Since 1989, National Infertility Awareness Week (NIAW)® has sought to raise awareness and promote knowledge of the issues faced by those struggling with infertility. Sharing facts about infertility and the services required by those struggling to build families helps inform decision-makers and communities alike. NIAW® offers opportunities to share stories and build connections that combat the isolation experienced by those affected.
My Little Miracle Man
Below we share the touching story of a woman with TS who chose IVF to fulfill her dream of becoming a mother.
What I Wanted Most in Life
As I rock my son to sleep, I am amazed that he is actually here. The journey I had to take to become his mother makes me want to hold on and never let go.
I knew from a young age that being a mother was what I wanted most in life. My favorite toys were dolls, and as I moved to adolescence, I loved taking care of my younger sister and cousins. Every time I was asked what I wanted to be when I grew up, I said “a mommy.”
I also knew from a young age that it would be difficult, if not impossible, for that to become reality. I was diagnosed with TS when I was five years old. Short stature, kidney issues, heart issues, and hearing issues are common. I could, and did, deal with all that. But as I got older and had to be put on hormone therapy to jumpstart puberty, I became aware of another common issue that wouldn’t be so easy to deal with: infertility. Girls with TS do not produce hormones on their own. Most are born without ovaries (like I was), and all go into premature ovarian failure. Just like that, my dream was taken away from me.
People told me I could always adopt and give a child a much-needed home, and I figured that’s what I would do. I mourned the loss of being pregnant and of feeling my baby grow inside of me. I
mourned the loss of listening to the heartbeat and seeing sonogram pictures, and of being able to look for my features mirrored in my child.
When I was 29, I went to my first meeting of a local TS support group. I met many wonderful people, but one woman in particular had a major impact on me. Erica was a beautiful, generous, and kind woman with TS; my husband and I clicked instantly with her and her husband. As we got to know them, Erica told the story of going through IVF, getting pregnant, and giving birth to twin girls. I had renewed hope. If she could do it, so could I!
(Check out Star Sisters, TSF’s private, online support group, to meet others like you, share stories, ask questions, and build community.)
Starting the Process
We knew it wouldn’t be an easy or inexpensive process, nor was success guaranteed, but we knew we had to try. My husband and I saved for three years before deciding we were ready. In a moment of amazing generosity, my sister offered to donate her eggs so the baby would still partially have my DNA.
In 2011, I had my initial appointment with the fertility center. The doctor was very optimistic, but I was dealt my first mini blow of the process: Because of my heart condition (I have a bicuspid aortic valve and am at a higher risk for aortic dissection), he would only implant one embryo at a time.
We had heard all the stories about couples trying IVF several times before being successful, even with multiple embryos
implanted. We weren’t sure we had the resources to try a second time, much less five or six. I remember begging my doctor to at least implant two at a time, but he stood firm.
Getting Cardiac Clearance
The next hurdle was getting cardiac clearance. I had to have an echocardiogram and a cardiac MRI to ensure my heart was healthy enough to handle the stress of pregnancy. After two appointments, intensive reviews of the scans, and a long discussion where the cardiologist went over all the risks (5% risk of aortic dissection, 1% chance of it happening without them catching it in time), I was given the go-ahead to proceed with IVF.
When I discussed my infertility, people told me I could always adopt and give a child a much-needed home, and I figured that’s what I would do. I mourned the loss of being pregnant and of feeling my baby grow inside of me. I mourned the loss of listening to the heartbeat and seeing sonogram pictures, and of being able to look for my features mirrored in my child.
Trusting My Doctors
Even with this clearance, I had many people in the TS community advise me against going forward. I was told it wasn’t safe and I was putting my health at risk. Warning after warning came about aortic dissection and preeclampsia. I trusted my doctors, though, and wanted the experience of being pregnant and carrying a child.
In April of 2012, I was implanted with a single embryo. Again, the doctor was confident, but I was nervous and worried that it wouldn’t work. After the longest two weeks of my life, I was told I was pregnant! It worked on the first try!
I was monitored very closely. I regularly saw my cardiologist, my obstetrician, and a high-risk obstetrician. The hardest appointments for me were with the cardiologist. There wasn’t any strenuous testing–basically just an ultrasound of the heart. But I went to each appointment terrified that they would tell me the pregnancy was stressing my heart too much and I would be asked to make a decision I didn’t think I could make. Luckily, each echocardiogram showed no enlargement of the aorta.
Because of my history and preexisting conditions, I was tested very early on for gestational diabetes. Of course, the one test I wanted to come back negative came back positive. I was immediately put on a very strict, 1,200-calories-per-day diet. (My numbers were so high with the half-hour test, they didn’t even have me come back for the two-hour one.) I complained bitterly
about the rigid diet and constant finger pricks, but knew I could endure anything if it meant having a healthy child.
Miracles Do Happen!
Other than the detested diet, the pregnancy went relatively smoothly, and I was able to carry my son to full term. A dream was finally realized, and my life was forever changed. As I lay my now three-year-old son down to sleep in his bed, I kiss him goodnight and thank God that I didn’t listen to the naysayers. Miracles do happen!
TS & Infertility
Infertility is a reality faced by most women with TS. Premature ovarian failure (sometimes called premature menopause) is common among women with TS. This means that the ovaries no longer fulfill their reproductive and hormonal roles. While hormone replacement therapy may alleviate some symptoms of ovarian failure, it does not restore a woman’s ability to become pregnant.
Every woman must determine the right path for her when choosing when, how, or if to start a family. Partnerships with medical specialists knowledgeable about TS and infertility are essential to help each woman make a decision that balances her particular features of TS, personal risk, and dreams for a family.
It is also important to remember that not every woman wants to have children. There are many types of families that do not necessarily include biological children and pregnancy. Societal pressures can make some women feel that they must have children, but reproduction is a deeply personal decision that should be respected. There are many beautiful and unique aspects of being a woman besides having biological children–or having children at all. Whatever the case, a woman facing infertility is no less a woman! See this article from Verywell Mind
about happiness among those who choose not to have children.
Infertility is a personal and emotionally fraught experience that can leave families feeling alone. TSF and NIAW® share resources to educate families and their loved ones about infertility and offer opportunities for those affected to share their stories and build community. TSF offers a wealth of resources (see below) to help you throughout the journey.
Share Your Story
to overcome obstacles. find joy, and fulfill our dreams.
Every individual and family affected by TS deserves to be heard, and for those who wish to share their personal story, we provide a platform. Simply complete this form on TSF’s website. You can share your first name and photos if you wish, or you can remain anonymous.
Each one of us can raise awareness by using our voice to create a better understanding of the impact TS has on our lives. When you share your story, you are enabling us to tell others about the needs of this community to seek positive change. We want to hear from you!
About NIAW®, National Infertility Awareness Week
National Infertility Awareness Week, Resolve
Prenatal testing is about to make being pregnant a lot more stressful, Quartz
A Quarter of Adult Don’t Want Children–and They’re Just as Happy, Verywell Mind
Written by an anonymous mother and Karen Green, TSF volunteer blog writer. Edited and designed by Susan Herman, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2023