My Daughter’s Congenital Hypothyroidism Saved My Life

My Daughter's Congenital Hypothyroidism Saved My Life

A woman named Shannon Hibbs contacted me one day with before and after photos that stayed on my mind for weeks. Her story is one of those stories I knew I had to share at Hypothyroid Mom.

Written by Shannon Hibbs, Founder of Thyroid Awareness on Facebook

My Daughter's Congenital Hypothyroidism Saved My Life

Olivia

At 11:18 AM on August 20th, 2013, I gave birth to my third baby, Olivia. Little did I know I had just given birth to a little girl who would save my life shortly after.

When I found out I was pregnant in January 2013 I had mixed feelings. I had been in an unmotivated mindset for so long and couldn’t imagine taking care of another baby. I had an overwhelming feeling that something wasn’t right. I hadn’t felt like myself for a while, but at the time it never occurred to me that it was something real.

I always referred to Olivia as my peanut because I was very small with her compared to my two previous pregnancies, but in my third trimester I suddenly became extremely large. From then on it was hard for me to do anything.

My Daughter's Congenital Hypothyroidism Saved My Life

This is me at 35 weeks

At 34 weeks my doctors diagnosed me with Polyhydramnios, the condition of having too much amniotic fluid. This was very new for Matt (my fiancé) and I and we weren’t sure what to expect. I just wanted it to be over. I couldn’t take care of my kids anymore, I felt useless around the house and was just so uncomfortable all the time. Because of the extra fluid there was a chance of prolapsed cord and with the hospital being almost an hour away it was very unnerving to consider. I saw doctors four times a week in the last four weeks. Checkups, ultrasounds, and non-stress tests (NSTs), which usually ended up being a three hour hospital visit because of how much she moved around. No one was sure why there was so much fluid, but they knew she wasn’t swallowing properly which resulted in two amniocenteses, a week apart, which showed that her lungs weren’t fully developed. For this reason, the doctors wanted to hold off trying to deliver her. The longer she was in me the better chance she had at fully developed lungs at birth.

At 38 weeks it was safe enough to go in for a c-section and I was scheduled for one August 21st. Unexpectedly my water broke the morning before. I was really nervous because this was my first c-section, but as always Matt kept me calm. Being my smallest baby (see, she was my peanut!) she weighed 6lbs. 9oz. She had to go straight to the NICU so I didn’t get to see her until later. Nearly 7 liters (35 pounds) of extra fluid came out during my surgery. Two days later the Neonatologist spoke to Matt and I about sending her to another hospital to see specialists. He was concerned about how calm Olivia was and that she didn’t move around much and barely cried. She was transferred to HUP (Hospital University of Pennsylvania, two hours away) on August 22nd.

Nine days after she was born we received a phone call about her newborn screening. She was diagnosed with Congenital Hypothyroidism. Olivia was born without a thyroid and would be started on Levothyroxine promptly. Having no idea what that meant I immediately got on the computer to find more information. I don’t remember the link I clicked on, but I remember some symptoms I read including constipation, intolerance to the cold, depression, and exhaustion. The more I read about hypothyroidism online, the clearer the picture became about my own ailment.

For the next month our life was very hectic, driving back and forth to Philly from the Poconos, learning about hypothyroidism, recovering from the c-section. Finally, after what felt like forever, September 22nd we got to bring our baby girl home. Once settled, I made an appointment for myself to see a doctor. On November 6th I went in and explained to my doctor how I had been feeling and told him about Olivia. I had blood drawn.

My TSH level was at 90!

Although I had no idea what that meant, answers brought me some relief. After countless days of researching on the internet and reading Mary Shomon’s book Living Well with Hypothyroidism: What Your Doctor Doesn’t Tell You…That You Need to Know I decided to start a Facebook page called Thyroid Awareness. I still don’t completely understand how we both survived that pregnancy. Everything I have read says infertility, miscarriage, still birth, complications, or birth defects. Had it not been for Olivia’s miraculous birth, I may still be suffering from a disease of which I had never even heard.


I knew so little about the thyroid world and even less about how this little gland affects your entire body. The last two years are very blurry to me. I was scared. I didn’t know what was happening to me. Because of Olivia I have this urge that I have never had as much as I do to share her story, our story. She is such a strong little girl and because of her I found strength in myself I didn’t know existed. I’m presently working on a blog to explain more in depth some of the things I experienced while sick and to continue spreading awareness. I would also like to thank Dana, Hypothyroid Mom, for giving me this wonderful and much appreciated opportunity to share this with others.

My Daughter's Congenital Hypothyroidism Saved My Life

Big sister Madelyn and big brother Noah visiting Olivia

My Daughter's Congenital Hypothyroidism Saved My LifeOlivia all ready to see her endocrinologist today! 

Shannon before/after

This is me now after starting thyroid medication

thanks to my daughter.

Connect with Shannon Hibbs

Connect with Shannon on her Thyroid Awareness Facebook page, on Twitter @Shannon404, and by email scatherineh@gmail.com

Take Back Your Thyroid Health! Sign up and never miss a post - it's FREE


About Dana Trentini

Who knew that little butterfly-shaped thyroid gland at the base of my neck could affect my life so completely? I founded Hypothyroid Mom in memory of the unborn baby I lost to hypothyroidism. Winner of two 2014 WEGO Health Activist Awards: Health Activist Hero & Best In Show Twitter. *Hypothyroid Mom includes Affiliate links. Connect with me on Google+

Comments

  1. Shannon says:

    Thank you again so much Dana! I love it :)

  2. I was diagnosed with hypothyroidism when I was 16 I am now 30. I have been overweight my entire life and it’s so frustrating. Infertility stress intolerance to cold and conjoined with pcos really tops the cake. Sometimes I feel like just giving up insurance is so expensive anf going to an endocrinologist is even more expensive!! I just pray for a miracle!!

  3. So glad to hear you and baby are ok & that you are now getting treated for hypothyroidism!! My TSH is not that high, but high enough to cause me problems. Will keep looking for a doctor who will help.

  4. I have been suffering from some of the worst symptoms I have ever had for anything and it seems that this thyroid failure has been going on for over 10 years. I am so angry that my doctor assumed I was depressed and sent me to see a mental health professional and over a 10 year period every symptom I had was explained away as part of my anxiety and depression. I was at a point that death was better than suffering each day. I am now trying to get my life back after the diagnosis of severe hypothyroidism and I am angry that not one person thought to run blood work before prescribing anti-anxiety and mood stabilizing drugs that had absolutely NO effect on me. I would tell them that nothing was working and I was switched to another drug. This was never ending and so expensive. I lost so much by this misdiagnosis and I cannot believe how ‘text book’ my symptoms were. There needs to be more attention brought to this for people who are suffering and misdiagnosed. I am working on healing and have a long way to go but I am better each and every day.

  5. Hi,

    I love this website. Like you, I have been suffering but stayed strong and kept fighting. I have been spending the last 3 years trying to understand what is going on with my soon to be 5 year old who started to exhibit autistic behaviors at age 2, but fluctuated between totally normal and really odd from week to week. A 3 year odyssey ensued where we went to doctors, had him tested and tried many diets. This past winter was the worst when his behavior began to worsen with depression, ADD and rages. During this time I have had a successful career, but had begun to deteriorate emotionally, mentally and physically. I finally hit a low when I realized that “playing with” my son should not be laying on his bed while he plays with his Legos. I decided I wasn’t helping anyone in my state. I assumed the stress of it all, job, my son’s health, my marriage, etc. were stressing me and probably taking a physical toll. I read about adrenal insufficiency and went to a doctor who diagnosed me with adrenal insufficiency and hypothyroidism. After reading so much about this I realized I was hypo since puberty and suffered probably needlessly for 30 years. The worst of it is that my son’s issues probably stem from my really awful pregnancy where I was extremely depressed before and after giving birth. I learned that I was likely hypo during pregnancy and likely he was impacted and still is. Next week my son will be examined for hypothyroidism. I am half hoping for this to be the cause, otherwise he is doomed to years of special ed and Ritalin. I wish this article had more info on what to do for these little guys. I am so sad for him…and sometimes, on rare occasions when I have a free moment, I feel sorry for myself and just cry. Everything seems extra overwhelming, like there are way too many details and things to do for my little life. Being so overwhelmed (due to brain fog and memory problems) has left me socially isolated because I am so inefficient at work and at home, the things I need (friends, working out, romance) just don’t happen because I don’t make time for them. Please keep up the work with this site. I just sent the link to my niece. I think every woman in my family and maybe some of the boys, have thyroid issues. This post made me think of my mom and my birth, she had too much water and the cord was around my neck. Mom later reported having thyroid problems as a child. I am now 47 years old and the pieces of the family health crisis appear to finally be coming together. We need more awareness and you are doing a great job. Thank you!!!

    • Hi Sunny,

      I’m sorry to hear all you and your son are going through. Yes please have your son’s thyroid tested. Here are two articles, one from a mother’s who has a son with autism and congenital hypothyroidism (that was not diagnosed early enough) and another linking ADD/ADHD to hypothyroidism. Given the lack of awareness about thyroid conditions in general, even if one doctor says there isn’t an issue for your son, push to get multiple medical opinions to be sure all the bases have been covered. All the best for your son.

      http://hypothyroidmom.com/hypothyroidism-and-autism-the-story-of-micah-boy-genius/

      http://hypothyroidmom.com/hypothyroidism-addadhd-what-you-must-know-as-a-parent-to-protect-your-child/

      • Thank you for your support. As an update. After 2 months on thyroid and cortisone meds, I feel a bit better. I am able to think a bit more clearly and I have enough energy to get out of bed. Still feel down, have low blood pressure and still am losing hair, etc. After such promising improvement, I took our son to my thyroid doctor because his ADHD and oppositional behavior had reached a bad point with pre-school. The thyroid doctor looked at his EXISTING labs and said his TSH was high. Those labs were two years old and nothing was done! Several doctors looked at it, but only my thyroid doc and maybe Dr Brownstein would rate a 3.8 as high. We are going to run more tests and I am going to take the basal temperatures for him. We are getting pressure from his school and neurologist to put him on meds for ADHD and he only just turned 5. I am hoping my doctor can treat him without stimulants and we can have our son back. He seems to be getting more and more lost in the progression of this disorder and I feel like it’s a ticking time bomb with kindergarten coming in the fall.

  6. samantha horner says:

    I can relate to this. I was always measuring large w/my first pregnancy. I had to keep going in for ultrasounds and they just kept telling me I had a lot of extra fluid. They never diagnosed me w/anything. I had an emergency c-section because my water broke 1 month early. shortly after my son was born (healthy thank god) I was diagnosed w/Hashi. My TSH was 120. These doctors need better training! I am so thankful my son is healthy. I truly believe he was a miracle. My doctor told me I was knocking on deaths door.

    • Yikes, 120! That’s pretty terrifying. For as common as this condition has become, or as frequently as it’s diagnosed anyway, the lack of actual knowledge and proper treatment is frustrating. Getting a doctor to consider alternatives to JUST Synthroid is nearly impossible. I have gone through a few Endos in my time, but the current one has been so far the most proactive.

  7. I was born with this exact condition over 36 years ago, apparently I am in some medical textbook because of how I was diagnosed. I’ve been on some form of synthroid since prior to birth since my mom is also hypo, and she was my “transmission” of the medication prior to birth. If you’re consistent with your medication, and take the correct one for you (sometimes it’s not Synthroid), you can live pretty normally–in most cases.

  8. Ive had hypo for about 3 years. I found out because when I would eat my tongue and lips would go numb.. My thyroid was on a nerve. I don’t take my meds but I probably should. They took more blood and apparently they said its normal.. I’ve started to retake it. But I feel fine.. But it takes me a while to fall asleep at night and them I sleep late. I took an hour nap today, so I wonder once I start retaking it for a week or two if I won’t be tired anymore. If the dr said its normal do I not need to take it anymore? Thanks! What will happen if I don’t take it.. My mom has the same thyroid problem too.

    • samantha horner says:

      That’s funny, I go by Sami too. Spelled the same and everything. ;) I don’t see that often, just thought it was interesting.

Speak Your Mind

*