Turner Syndrome Foundation
Chelsea Patterson is a make-up artist and blogger from Michigan. Since losing her unborn baby, Noa, to Turner Syndrome (TS)-related complications, she has been on a mission to spread awareness of TS and support other angel mommies. Below is the story of how she worked through a tragic experience to honor Noa and help other women.
Note: Everybody’s experience is different, especially when it comes to pregnancy. If you are pregnant and have received a diagnosis of TS for your unborn child, please consult with a reproductive endocrinologist to determine the best course of action.
Noa's Diagnosis
Although it is difficult to share, I feel that it is important to be transparent about my experience with TS. I hope that it can help someone else along the way. My personal experience with my angel baby, Noa, and TS was devastating, to say the least. As a young woman in her mid-20s, pregnant for the first time, I was filled with joy! I had been looking forward to this moment my entire life; never considering any complications.
The first time I heard the term TS, my life changed. I was 10 weeks pregnant, anxiously awaiting the results of my non-invasive prenatal testing (NIPT). This would determine our baby’s gender and whether there were any other problems. I never imagined learning I was pregnant with a precious baby girl by way of a TS diagnosis. The original diagnosis was heartbreaking, since I knew Noa would experience many challenges throughout her life. Nonetheless, I was prepared to support her at every turn.
Devastating News
I returned to my specialist, hoping to learn more information about TS and see Noa thriving, despite her diagnosis. Unfortunately, my specialist did not have the best bedside manner with me while delivering the most heartbreaking news I had ever received. They gave me very cold look and said, “There is no nice way to put this, so I’m just going to be honest with you. The baby isn’t going to make it.” They explained what was showing up on the ultrasound screen, pointing out that Noa didn’t have any amniotic fluid. This was essential to her survival.
At first I was silent, but then I went to crying uncontrollably within seconds. Something had broken inside of me. I was in complete disbelief that things had taken such a drastic turn. I was not expecting them to crush my dreams for motherhood entirely! The medical team told me there was nothing that could be done. Even if I carried Noa to full term, there was no chance she could survive outside my body. Her development was severely affected.
The experience with my medical team felt harsh. It is important that all women–all people, for that matter–have the most sensitive and professional medical care. My advice to anyone facing a similar situation would be to establish a comfortable rapport with their medical team as soon as possible. I would also encourage medical professionals to truly consider their patients’ feelings and try their best to share information and diagnoses in a way that shows they care.
Fact: TS is responsible for 10% of all first-trimester miscarriages.
Precious Little Warrior
"...becoming an angel mommy has opened my eyes and shifted my perspective to be able to see women and our situations in a completely new and different way."
Shortly after the TS diagnosis, we were informed that Noa was also battling several other issues that were affecting her growth and development. TS was causing baby Noa’s body to become inflamed due to excess fluid build-up, a condition known as cystic hygroma. Learning of Baby Noa’s diagnosis left my mind racing and my world reeling. The reality was hard to shake. I had so much going on in my mind, but I knew I had to find out more about my baby’s condition. Due to the complexity of this syndrome, we made an appointment with a high-risk pregnancy specialist. I was a nervous wreck on the way to the appointment, but I tried my best to stay positive and hold myself together once I arrived. After all, that’s what mothers do, right?
It was becoming evident that Noa would have a heart defect if she survived. Sadly, she experienced heart failure from the build-up of fluid in her stomach and eventually her lungs. At five months pregnant, I lost her. Her tiny heart was working so hard to overcome the battle; she was truly a precious little warrior! There is no doubt that TS has rocked my world and changed my life in a pretty painful way. I have managed to glean some positives from the experience, though. For starters, becoming an angel mommy has opened my eyes and shifted my perspective to be able to see women and our situations in a completely new and different way.
Learning and Moving Forward
Having spent a considerable amount of time researching TS, I now know a lot about a condition I once never knew existed. The more I educate myself, the more inspired I become to spread awareness about TS and also pregnancy in general. When most people think of pregnancy, they automatically think of happiness. That is great, but we must never forget about the women who struggle with pregnancy loss or fertility issues. I enjoy sharing information with others and helping people find new ways to support causes that we should care more about.
After learning of Noa’s diagnosis, I began to research the condition extensively. That’s when I discovered the Turner Syndrome Foundation (TSF), and I instantly connected to its mission. I confirmed what I had learned about TS and found value in the many resources and information the organization provides.
In January 2020, I decided to tailor my own personal fundraising goals to align with national TS Awareness Month in February. I created a memorial fund page for TSF in Noa’s honor. Also, I helped promote the mission of TSF during that month on my blog and social media channels to encourage donations. I am grateful to know that there is an organization committed to making a difference and raising awareness for this worthy cause. To donate to Noa’s memorial tribute fundraiser supporting TSF, click here.
Fact: Only 1-2% of fetuses with TS survive to birth.
My Greatest Accomplishment
My greatest accomplishment, hands down, is becoming Noa’s angel mommy. Since saying goodbye to Noa, I have created a blog in her honor, Living for Noa, to provide a safe space for women with similar experiences to connect, uplift, and provide a community of support. I believe that sharing my story is a starting point that will support the collective healing of women and families like mine. Hopefully, my story and efforts will inspire others to share their experiences to increase awareness, resources, and support for this silent struggle.
As a make-up artist, I also launched an eyelash extension line named after my angel baby called Noa’s Wings. The initial goal was to help pay for Noa’s memorial expenses. I have since committed to donating a portion of monthly sales to support other angel mommies and families with similar costs.
I had no idea that my experience and launching Noa’s Wings would inspire me to assist other women and families who are traveling the same painful road. As I continued to reflect on the planning and preparation process for Noa’s special day, I was strengthened and encouraged by all that I had overcome. I thought about how many women must be dealing with this annually. What if I could somehow help them along the way?
The idea that other women shared my pain and journey began to consume my thoughts. It was on the other side of that that I discovered my true passion and purpose. I decided to devote my energy and resources to becoming an advocate for pregnancy and infant loss. Hopefully I will be able to bring some good out of my struggles and loss and help other women along their journey. So I began where I was, with what I had.
Fact: 1 in 2,000 babies born female live with TS.
Thinking Towards the Future
One of the many things I’ve found myself struggling with after my experience is deciding whether to try to conceive again. After my miscarriage, people would try to encourage me with statements like, “Oh, you’re young; you still have plenty of time to have another baby!” or “It’s okay; you can always have another baby.” Those comments were more hurtful than helpful, but I chose not to take them to heart. Motherhood is definitely a dream for me, and, after being an angel mommy to Noa, my desire is even stronger. But so is my fear of the process!
There are so many questions to consider, and I find myself thinking about how to ensure the perfect pregnancy. I’ve always imagined pregnancy to be a beautiful experience. I don’t want to spend my entire pregnancy worrying about the possibility of miscarrying again or deciding on the right timing to share news of a new pregnancy. To try again, or not to try again, and if so, when? Those are the questions.
Tips for Delicately Approaching and Supporting Angel Mommies
Dealing with pregnancy loss is a very fragile and difficult experience to endure, discuss, and overcome. In my personal experience, one of the hardest things for me to deal with while processing my loss was figuring out how to handle people. I also had to manage how people were handling me. I learned that there are also some people who genuinely don’t know what to say or how to react to such delicate news; those people deserve a little grace. I found most women to be understanding and sincerely empathetic.
Sadly, the harshest and most tactless comments were from men. Guys would carelessly say things to me like, “What’s up? I heard you were having a baby!” or “Dang, you still don’t have a baby yet?!” These painful comments would catch me off guard. But they also helped me learn not to fault people for their ignorance about how to properly approach someone who has experienced a miscarriage or infant loss. So I wrote a post for my blog entitled “5 Ways to Delicately Approach Infant Loss and Support Angel Mommies.”
- Think before you speak – As I mentioned above, some comments can be more hurtful than helpful, which can cause another layer of emotional distress for the already grieving angel mommy. All of our bodies are different, and you never know what health or fertility issues a woman could be dealing with. Besides, nobody wants to hear negativity during this time. Thinking about what you before you say it can make a world of difference spare further hurt.
- Learn to listen and be silent – Lending an open ear and a shoulder to cry on is better than providing “therapy” during painfully hard times. People are so used to offering unsolicited opinions, but in some instances–like this one–you may not need to say anything at all. This is especially true if you cannot personally relate. Sometimes being silent but present is more than enough. Offering a simple “I can’t totally relate, but I’m here whenever you need me” can work just fine. For me, having this type of support made me feel like someone actually cared to understand my feelings and emotions. Just knowing that you have someone there for you, without judging or offering advice, means so much.
- Offer space and time – Everyone processes pain and healing at their own pace and in their own way. After this experience, there are so many emotions and thoughts to deal with, so “alone time” is absolutely essential. Giving people space and time is key. I personally needed lots of time alone. I didn’t want to leave the house–or my room, for that matter–for quite a while. Others may find that getting out of the house and into some type of healthy routine to be refreshing and a great way to find peace of mind. No matter how long it takes. Unless it is unhealthy or spiraling out of control, I recommend allowing space and time for grieving, healing, and rediscovering purpose.
- Don’t tell people what you think they should or shouldn’t be doing or how you think they should be reacting. Why? Very simply, you have no idea what they might be going through or how their lives have changed forever. To be frank, your opinions mean very little at this time, so just let people be. I speak for myself and I believe all other angel mommies in saying, “This is my situation. It’s extremely personal, and if I want to cry all day and night, for weeks on end, I will.” Whatever it takes.
- Be empathetic – Last, but not least, if you learn nothing else from this piece, please take this and pass it along. Be empathetic, which simply means to put yourself in someone else’s shoes for a moment and try to understand how they feel. How would you feel if someone approached you regarding this situation? What might you find helpful or supportive during a time like this? If we can all practice putting ourselves in others’ shoes, we can help to lighten the load someone else is carrying.
This article was written by Chelsea Patterson, an angel mommy to Noa, and edited by Susan Herman, a TSF volunteer lead blog editor.
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© Turner Syndrome Foundation 2021
