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 [email protected]

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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 :)

    • Thank you so much Shannon for sharing your story. Your daughter gave you a special gift. A pleasure to share your story at Hypothyroid Mom.

    • Shannon, my daughter also was born with CH she is now 7 and some days are better than others, like yours she is my youngest. She is very special and I couldn’t imagine a day with her! Thanks for sharing tour story. Did they ever tell you what your daughters TSH level was on her newborn screen? I think my daughter was in the 280’s. No doctor picked up on anything until the newborn screen came back, she was even admitted to the hospital for jaundice, when we went to our pediatrician for the hospital follow up thats when we got the NS results. We were immediately readmitted to the NICU my Izzy was so orange from the jaundice that she looked like an oompa loompa. Long story short, if you can say that lol, synthroid saved her life, along with feeding tubes, prayer and the doctors and nurses at local children’s hospital.

      • My CH baby daughter was born 22 days overdue- a big 8lb.6 oz. baby with a huge placenta and no problems during pregnancy but her Apgar score at birth was 2! Once they got her breathing, she slept “too much” and had cold bluish feet but always nursed. State screening diagnosed her T4 at 3 weeks but at 2weeks she was readmitted to hospital for jaundice so bad it threatened to cause seizures. Dye Scans showed 0 thyroid gland. She thrived on Synthroid and grew rapidly. She did well until college but had problems with joints, connective tissue, fainting etc. even though her thyroid is well monitored. Today she is 32 and pregnant . After losing 3 babies (one born at 18 weeks) she is working with a high risk team and experiencing a very normal pregnancy so far. She teaches first grade.We worry about unpredictable health issues she may endure but are so grateful for our beautiful smart daughter saved by mandatory newborn state testing. Good wishes to all here.

        • I was born with Congenital Hypothyroidism, I was also three weeks late. I wasn’t diagnosed until I was three months old because they weren’t testing newborns in 1971.
          You mentioned that your daughter faints, have you found out why? I ask because I had many episodes that I can only describe as a “conscience faint”, I would lose my vision and 90% of my hearing, but I never “passed out” in the classical way. I could tell when it was about to happen, so I found myself a place to sit down and wait it out, trying to not draw attention to myself. In hindsight, that wasn’t so smart because I never found out what was going on! I knew that my Mother and Sisters had fainted before, but they always did it “Properly” and it was usually “at that time of month” so they always had an explanation. My Parents were aware of it happening, but for whatever reason, I never got an explanation from the Doctors. I always thought it occurred because I was extremely thin growing up, but since you daughter also has Congenital Hypothyroidism, I wonder if it is related somehow.

  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!!

    • I know just how you feel. I was diagnosed at 16, while in the hospital for a pulmonary embolism. Found out I was extremely anemic (had to get a transfusion), and had hypothyroidism.
      I’m 34 now and still overweight. I gain back more than I loose, when I do loose any, and my Levothyroxin ‘script’ is constantly being changed when they do blood work.

  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.

    • GPs here in New Zealand are pretty blasé about it all… I have to ask to get levels checked six monthly which come back ‘normal’ and I know they’re not testing all the different ones by the way I feel and look. Shannon’s photos are so like mine puffy and bloated. I hate having my photo taken. Ongoing weight gain, severe fatigue, lethargy, crap sleeping patterns, insomnia, bloating, dry skin… the list goes on :(

  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.

        • My daughter also has hypo and she is progressively getting worse adhd symptoms, its affecting her at school now as well Hang tough, you can do this, the longer you are on the ththyroid meds the better you will feel.

        • My daugther was diagnosed HT 8 years ago. We started having behavioral issues last year and requested an ADHD evaluation. What we discovered was her thyroid levels were off and that when my daughters thyroid levels are out of wack her behavior is terrible. Every time we start having behavioral issues we have her thyroid levels tested and they prove to be off. When we adjust her meds her behavior corrects within a week. Don’t give up and don’t assume it’s ADHD.

      • The ADHD cases should be screened for High Functioning Autism. It’s frequently diagnosed first as ADHD and then they discover it’s actually Autism. The characteristics are closely related.

        I was born with Congenital Hypothyroidism, that wasn’t diagnosed until I was three months old (no newborn screening in US in 1971) We always assumed that my struggles were due to the late diagnosis, about four years ago I discovered that I have Asperger’s (HF Autism) and that explains my difficulties perfectly!

    • Try for sharing your story….it made a lot of sense about myself an grandson that is adhd now they trying to say he is showing signs of autism.

  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.

    • Cari Dickenson says:

      BE careful Sami, Mine was going back and forth.. high to low… all over the place… So I would feel great for months lose weight like it was nothing then drop and gain weight and have no energy… Just be careful and keep an eye on those numbers. Even now the docs have me running high on synthroid.. and I don’t feel very good, No energy.. thin hair… tired all the time and full pain in my body in places there shouldn’t be any:/ They won’t give me any other meds and I wonder if there is something I can take on my own natural that might help…

  9. Katrina Jaggars says:

    I was diagnosed with Hypothyroidism almost 5 years ago.And I guess I can say my mom saved my life.She was never diagnosed and passed away from colon cancer.
    I was told I needed to have colonoscopy done early,cause I was a 1st degree of relation.My heart rate was low n I had complications from the anesthesia.If I wouldn’t have had the colonoscopy I would have never been diagnosed.
    I wish that she could have been diagnosed

  10. Hi, I am 26 and have had Hypothyroidism since I was in the 5th grade. My mom was also diagnosed shortly before we found out I had it and had part of her thyroid removed. I still have my thyroid but is very enlarged. I take Levothyroxin everyday and was told that I would have to do so for the rest of my life. One thing that scares me about having a thyroid issue is when my husband and I decide we are going to have kids. I was told that as long as my thyroid level were stayble that I would have no issues, but reading the stories I have still scares me. Its nice to know there are more women out there just like me.

  11. What an amazing story thanks for sharing! Was it the meds that gave her drastic weight loss and “de-puffiness”?

  12. Denise A Dietsche says:

    At the age of 31, after feeling miserable for more than two years, I was finally diagnosed with Hashimotos Thyroiditis/Hypothyroidism.

    The male doctors I had been seeing said my symptoms were “female” related. I had been referred to a female doctor for my ongoing depression symptoms.

    I will be forever grateful for HER awareness on thyroid issues. She mentoned it had been past practice to test patients for thyroid who presented with Depression. She said the medical field had gotten away from this practice but she still believed in TSH testing. This was in 1994.

    My TSH was 134. No wonder I had felt so miserable for so many years.

  13. My son was born at 39 weeks by a planned csection and 1 week after we were home from the hospital I recieved a phone call from our pediatricians office. They said he was severly hypothyroid from his newborn screen and wanted to have more labs done just to make sure it wasn’t a mistake. His TSH levels were in the 600’s! We were immediately sent to a pediatric endocrinologist at the Univ of Michigan. His Dr. Did more blood work, testing for maternal antibodies and xrays on his knees. From the xrays they could tell he stopped growth inutero at 37.5wks. He tested positive for maternal antibodies and his specialist said I must have had a case of Hashimotos in the 3rd trimester and it crossed the placenta and attacked his thyroid. She recommended I get my thyroid checked and my blood work came back normal! My son has been on Synthroid since birth and is now 10yrs old . He is very healthy and doing very well. We can tell when his levels creep up he does tend to fall asleep while watching tv and does get ornery. He is growing so levels have to be checked and medication doses change every so often but so far it’s been kept under control. The key is to find a good pediatrician and pediatric endocrinologist, i am so thankful for ours! !

  14. This was a good article. I have 2 sons born with congenital hypothyroidism the first was picked up in newborn testing, the second time I picked it up after his levels kept coming back normal and my persistence got him diagnosed at 2 months. I like most of you think of the future for my boys with it. If they will have any other health problems. Good luck to all of you.

  15. I’m being treated for hypothyroidism for 12 years now, although I truly believe that I have it since I was a girl. When I was 18 years old, was diagnosed with endometriosis and polycystic ovarian syndrome, and was treated with hormonal pills, my gynecologist did not check my thyroid levels. I was suffering silently for years and during my pregnancies, and finally I reach a level of postpartum depression and overweight, that force me to visit an specialist, so I went to a endocrinologist, my TSH level was 80, I have been with Hashimoto’s disease for years. Today, my youngest son is 13 years old and I am checking his thyroid levels as well.

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