Meant to Live

Ivy was diagnosed with Turner Syndrome at 16 weeks in utero. The doctors gave us no hope that she would live. But 20 weeks later, our little girl beat the 1% odds and came screaming into this world and she’s been a fighter ever since. After open heart surgery and 5 weeks in the hospital, she proved that she was meant to live. She’s sweet and equally is feisty and we couldn’t imagine our life without her.

With that being said, our experience throughout my pregnancy was awful. As a medical professional myself, I was appalled at the lack of information and the advice we were given. And after reading other mom’s stories, I’m convinced that there is a huge need for education to not only parents of Turner Syndrome babies, but more importantly doctors. The doctor that told us that something was wrong with Ivy looked at the ultrasound, told us that she has a very severe case of abnormalities and that she would most likely miscarry or be still born. Nothing else. He didn’t mention that although these babies don’t normally survive that if they do, they live a normal healthy life. What he did tell me was that I might as well go ahead and get an amniocentesis because she’s already at such a high risk of miscarriage that the risk of the procedure causing a miscarriage didn’t matter. Here I am, sitting alone in a room with my husband on the phone 7000 miles away, listening to a doctor already write off the child I was just getting to know.

Now if I didn’t have the beliefs that I hold and the knowledge of the medical world that I do, why wouldn’t I choose to terminate my pregnancy after what little the doctor told me? Did you know that one study showed that 78% of women who were carrying a Turner Syndrome baby chose to abort even though babies with sex chromosome abnormalities most commonly do not have life threatening or severe symptoms after birth and what they do have can all be medically managed? It breaks my heart that so many babies are not being given the chance to live becauseof lack of information on doctors and parents parts. It makes me wonder if the 1% chance of survival would be higher if we stopped playing God and gave these girls a chance to live.

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Succeed in School

A Guide for Teachers: Turner Syndrome in a Classroom Setting
Statistically, in 1 out of every 160 classrooms there is a girl with Turner Syndrome. This guide will help teachers Identify and understand cognitive strengths and weaknesses, social functioning issues, and recommendations to create an optimal learning environment.

Educator card common indications 2_Page_1

 

Maria Anne Forever in My Heart

My name is Jennifer, and I was born and raised in the Chicagoland area. I am the oldest of six children. I have four brothers and one sister. It was fun growing up in a big family and challenging and supporting each other in many ways. My bachelor’s degree is in Hospitality Management with a minor in Event Planning. I went to a small private hospitality school, and on the side while studying I trained and ran two half marathons and two full marathons. I had the opportunity to travel to Sydney, Australia and study there for a semester, and go to Rome for Easter week with my classmates for a conference too. Towards the end of my college career, I was able to land a job at a high end hotel chain. I continued working for the same hotel after graduation. In 2010, I decided to move to the Philadelphia area to continue working in the hotel industry. After five years of working in the hotel industry, I decided to make a career change, and I ended up landing a job in the Life Insurance Industry in the summer of 2012. I knew very little about the Life Insurance Industry, but I was very excited and eager to learn. I have since moved back to the Chicagoland area, and I am still working in the Life Insurance Industry, and I enjoy the work that I do for a living. When, I am not working, I enjoy running, reading, cooking, traveling, attending culture events, spending time with family and friends, and volunteering my time to the community.

Shortly, after I got married, I found out that I was pregnant, and I was really excited. I had always wanted to be a mother and have a big family. Since, I grew up in a big family; I have always had that dream of wanting the same. I was raised in a Catholic family; and I grew up with a lot of other big families in the neighborhood. However, shortly after I found out that I was pregnant, I knew what they like to call it “motherly instincts” that something was terribly wrong. At first I thought that I was going to have a boy, because it was a really difficult pregnancy, and I joked at times that “boys like to just make trouble”. I did not experience a lot of morning sickness, but I was extremely exhausted all the time, and always sick to my stomach. I experience some colds too in the mix, and when you’re pregnant you cannot take certain medicine that would have relieved the cold symptoms. I was working full time and my commute one way was 26 miles. I had an ultrasound picture taken at nine weeks, and things seemed to be looking good; the baby was developing normally, and I was overjoyed and shared the ultrasound picture with my family and close friends. However, that “motherly instinct” of knowing that something was really wrong was still in my heart. My doctor who was a secular one was trying to convince me of taking a genetic test to see if there was anything wrong. And she said, if there was something wrong, that I could abort the baby. As a Catholic, I knew that was never an option for me, and I declined the test. Fast forward to about 15 weeks, I felt some flutters, which feels like a gas-like feeling, but it’s really the baby moving. It was the most joyous moment for me when I felt it for the first time. It nearly brought tears to my eyes at the little miracle baby inside of me. The next milestone was feeling the heartbeat, which came around 16 weeks. The doctor and I had a hard time finding the heartbeat at first, which for any first-time mother’s is frightening. The doctor and I eventually found the heartbeat, but the baby was sitting really low for 16 weeks, and I knew that was not a good sign.

Over thanksgiving, I no longer felt those flutters, and I knew something was really wrong now. It was 2.5 weeks later on December 13th, 2012 that I knew my little one had passed, because I had the signs that I needed, but I still prayed the rosary on the way to the hospital – almost getting into several accidents. I rushed myself to the hospital. I knew then in my heart that I was having a little girl. The doctor and I could not find the heartbeat. So we took an ultrasound picture, and the picture confirmed that my little one had passed. I had two choices to either go into immediate labor or have surgery. I chose to have surgery, and after the procedure I learned that my little one had Turner Syndrome, which only affects girls and it happens in 1 out of 2,000 conceptions. Also, I learned that she had stopped growing at 16 weeks, but she was kicking and was trying to make it. Most Turner Syndrome babies go in the first trimester, but my little one wanted to make it. She is my little angel, and she is named Maria Anne (after two of my favorite saints). She will forever be in my heart and mind.

I have chosen to volunteer with the Turner Syndrome Foundation and donate my wedding dress, because this is a cause that not many people know about and I would like to raise more awareness for it. And by donating my wedding dress, I feel a stronger attachment to Maria Anne, and I would like to share my story, which was mixed with both joy and pain. I want to let others know that they are not alone in this journey of a difficult pregnancy. I do not know what it is like to raise a Turner Syndrome daughter, but I can only imagine that it may not be an easy journey. I hope that my story can touch those families out there facing a difficult pregnancy, especially if the doctor is telling the family to abort the baby. I would have welcomed Maria Anne with a lot of joy and love had she made it into this world.

This is a new program for the Turner Syndrome Foundation, and I am happy to be helping the foundation jump start this program and I hope that we can reach and help as many families as possible. My inspiration is that families may be able to bury their little angel in a beautiful gown. This little girl is just as special and unique as another girl without Turner Syndrome. My hope is that my story will inspire other woman to donate their wedding dresses to the Turner Syndrome Foundation. All the proceeds that we get from making the baby gowns will go directly back to the Foundation for further research on this illness.

I did not have a memorial gown made for Maria Anne. Since, everything happened really fast, there was not a lot of time to make decisions. The doctor told me that the hospital had a place where they place the unborn. Since, I was filled with a lot of emotions, I chose to believe the secular doctor and place Maria Anne in that burial. It bothered me for a long time that I had done my daughter a disservice and I was a bad mother. It still bothers me at times; but I know that she is in a better place. I had the joy of experiencing a beautiful dream a few days after the surgery. In the dream, Maria Anne had the face of a Turner Syndrome girl, and she told me “Mommy, I am going to miss you, but I am heading to heaven now to be with God. I am going to be fine, and I will forever watch over you from heaven”. When, I woke up that morning, I decided to finally look up Turner Syndrome, and the face she had looked like the girls I saw on the internet with Turner Syndrome. That dream has brought me a lot of comfort over the years, knowing that she is safe. However, her name is written in a memorial book at a church and I had a few masses said for her.

Maria Anne will forever be in my heart, and my hope is that my story and journey can be an encouragement to other families out there struggling with a difficult pregnancy. I want families to be able to have an opportunity to bury their little girls in a beautiful gown. Unfortunately, I did not know about those resources at the time, or I would have done it in a completely different way. Either way, I know that Maria Anne is looking down on me everyday. Thank you for taking the time and reading my story and I hope that it can help you.

Know the signs. Diagnose early.

Turner Syndrome. Know the signs.

TAKE A LOOK AT SHORT GIRLS

  • Short statured
  • Verbally gifted
  • Learning issues
  • Frequent earaches
  • Delayed pubertal development

Click this image for common indications

Be the change you wish to see!

Doreen learned her baby girl had Turner Syndrome. She needed information and support to help her understand what comes next.

Autumn’s 6 year old daughter was diagnosed with Turner Syndrome. She needed resources and knowledge to help her care for her child.

Brooke was ready to transition from childhood to adult care. She needed guidance and tools to help her find doctors in her area and receive proper care.

Bonnie received a late diagnosis at 19 years old. She needed experienced physicians and a support network to help her manage her health and cope with her diagnosis.


Do any of these situations sound familiar to you? Each Turner journey is unique, but we all have one thing in common – the need for education, resources, and awareness.

By supporting the Turner Syndrome Foundation, you will help make sure that care and support is available to women and girls in the future.

Your donation directly impacts Turner Syndrome education, research, awareness, and advocacy. What does that mean exactly? It means that, with your support, TSF can continue collaborating with universities and researchers to advance TS research – leading to improved treatment options. It also means that TSF can continue developing science-based education resources for those affected and professionals, like the lifecycle resources that offer information at every stage of your journey. And finally, it means that TSF can speak to legislators, insurance companies, and the general public on your behalf to increase awareness and get you the support you need.

With a donation to the Turner Syndrome Foundation today, you can be a hero for every woman and girl affected.


If you can’t give, what can you do? There are so many ways to be a hero for this community! Simple actions like signing the Awareness Month petition, becoming a volunteer, or joining the TSRX research registry make a huge impact!

Turner Syndrome affects 1 in 2,000 females

She is a daughter, a sister, a friend. Women and precious babies diagnosed with Turner Syndrome require a lifetime of specialized care. This site has been created for providers and consumers with open access free from membership dues. TSF operates through the generosity of individual and corporate grants and donations. The complexity of this syndrome requires a greater philanthropic support to increase the capacity to foster healthier communities. We invite you to get involved and give generously to support this women’s health initiative.

Together, we commit to advance this mission!

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