It's been a long time since I have posted here. I had my first baby in December. We knew at 21 weeks that he would be born with a major congenital heart defect. Everything else appeared fine through the ultrasound. We continued the pregnancy because the surgeon seemed very sure and confident that the baby could be helped. I had an amnio done, and all the main chromosones came back fine. When he was born, they found he also has a cleft palate, and undescended testes, and his fingers are just a little funny in their shape (but mainly they look like mine, except for the curving.) In addition to his heart defect, he is missing his right pulonary veins, so his right lung is small and very ineffective. They are sending for the micro chromosones, and such, but they really aren't expecting to get anything back. So far, he doesn't quite fit any chromosonal anomaly syndrome.
Since then, I have been trying to blame myself (everyone tells me to stop doing that, I know. . . .) , and just today, I found that hypothyroidism can possibly cause some of these defects, too. Perhaps I was overmedicated, or maybe I wasn't taking enough?
I finally found a doctor who prescribed me Armour a year and a half ago. I was on 1 grain when I got pregnant. However, the doctor is not real close to where we live, and my TSH (my OB office did not understand Armour and didn't want to deal with it - they did give me a TSH blood test once, though. They said it was fine. I was euphoric with pregnancy hormones and thought I felt fine, so didn't worry much about it at the time) was okay. I couldn't get even my Armour dr to test my FT4/3 again while I was pregnant. Is there is a reason for that?
Now I am just worrying that it really is/was my fault. As a note, I have questioned every other med I was taking at the time, too. Maybe a combination of everything together? The heart defect and vein atresia (his particular combination is extremely rare - there is literally not much mention of it in medical literature) happened right when the heart formed around the third week development.
You can not blame yourself. Your MDs dropped the ball in my opinion. When someone is hypoT and get pregnant there dosage needs increase 25-50%. Why? I have been doing my own research and moved to the best MDs in my area because my husband and I are wanting to have a second child and my first pregnancy was right out of Hades. My son was born early (35 weeks) and weighed 10 lbs and appeared to be in perfect health. He is five and has had two ENT surgeries adenoids/ear tubes and tonsils/ear tubes. He also was born with sleep apnea. It took me 4 years to get him diagnosed because the pediatricians kept telling me children couldn't have it. I finally went over their heads and sure enough my son had severe sleep apnea. I flay myself over the 4 years he was stopping breathing 30+ times an hour every hour of his sleep. Now we are having to keep watch over his antibody levels and thyroid levels in conjunction with our allergist immunologist wanting to check out his immunological state. We just had to have six vials of blood drawn. All this has me questioning myself if I should have a second child and risk these issues or worse. In the ends you can only prepare yourself as best you can and have faith that all will work out accordingly. Let me share with you what my personal research and questions have dug up so you can be prepared in the future.
During the first 12 weeks the fetus is dependent on you for all the T4 he/she needs while his/her brain and thyroid begins to develop. It is here that many congnitive defects and down syndrome may be caused by hypoT. Most recent studies show that the normal 2.5% chance of congenital/cognitive defects raises to 30% if you are hypoT. The ATA and board of OBs state that you should have a TSH below 2.5 while pregnant and T4 blood concentrations about 50%. If you are below 25% you will have hypoT issues during pregnancy and your fetus is put at risk. Also being hypoT they should have tested you for Hashimoto's, the hypoT Autoimmune disease. Hashi's antibodies can cross the placenta and attack the thyroid of the fetus and increase your chance for miscarriage. Also being hypoT with our without AI thyroid antibodies, the OB or GP you use should have sent you to a MFM (maternal fetal medicine) MD for consultation and treatment. Were there none in your area?
Now these are all shoulda's.. they should have done X, Y, and Z.. I am certain the would have if they knew to do it. Most MDs do not have experience treating thyroid issues, nor do the follow closely to current research in the subject after they leave school. As a result of the lack of thyroid education out there, we are stuck helping ourselves and fighting for care. The insurance companies and MDs that worry about cost effective testing procedures do not help either. Hypothyroidism makes you high risk as far as pregnancy is concerned and you should have been treated accordingly. But there is always a chance something may go wrong. It is bad luck and misfortune when it does go wrong, but if we have done all we can there is nothing you can do besides pray. And the normal 0.3 - 3.0 TSH range only holds true as normal if the Fts coincide. Your MDs should have definitely had your TSH and FTs tested every 4 weeks minimum while pregnant.
Were you having any hypoT symptoms while pregnant? What were all the other medications you were on during your first 18 weeks? I fear that you will not be able to find the source at this late of date. You definitely will not be able to confirm what is at fault. So stop and focus on your baby, love him and enjoy every day with him.
I am not an MD and can only wish you and yours well. Medicine has come far in my 32 years and hopefully the pediactric surgeons and neonatal care physicians will be able to help your baby. I know that it is not your fault, you couldn't have known. You put your faith in your MDs. You could change nothing about your medication or supplements yourself. The MD was aware of everything and should have acted accordingly, if the MD didn't know how to treat you optimally they should have referred you to another.
I only know as much as I do, because my SIL is an top notch OB and has pointed me in the right direction. I also have a top notch OB, MFM, and IM monitoring my care NOW. My husband and I wanted to TTC child 2 last year. I was having many issues though. It was my new OB that thought I might have a thyroid issue. It turns out my first pregnancy activated Hashimoto's and I was spirally into a hypothyroid state. My issue was I was secondary hypoT. My TSH was 1.6 - 2.0.. very normal, but my FTs were too low. My old OB only tested TSH and never tested me for antibodies despite me telling her of my family thyroid history and requesting the full thyroid panel testing. I had to fight four years after the fact to get my then IM to test me for thyroi AI's.. because I knew the symptoms and was certian I had Graves and Hashi's like my mother. It was just Hashi's according to my blood work.. but blood work is not 100%. Once my Hashi's was confirmed I researched it thoroughly and had to fight my IM to send me to an Endo. My Endo told me wait and I can be treated when my TSH hit 2.5.. they didn't believe in treating symptoms or FTs if they were in range no matter how low in range they were.. however I was secondary hypoT and my TSH way never have jumped out of range. So IMO my FTs had to be considered as well. Thus I humored the Endo and went to the neurologist and cardiologist and allergist and dermatologist to treat the symptoms and find the source of my issues. After thousands of dollars in testing.. all pointed back to my Hashi's antibodies and thyroid as being the source of my problems. Still my Endo wouldn't treat me.. so I found a new MD on my Cardios recommendation and the Armour thyroid physician finder pointed me to the same practice. SO I took a chance.
Now I have an MFM recommended by my SIL and OB for prepregnancy genetic screening and consultation. My OB and IM want me to have a minimum of a FT4 level of 50% before we even try to get pregnant. This is going to take a dose of 75 - 100 mcgs of synthroid if my 50 mcgs 4 week blood proves indicative of a trend. But to get these MDs I had to go to one after another and find one that new the facts in accordance with the most recent thyroid research. I am in academia and brought many journal articles to my MDs so that they could educate themselves. So do not give up, it is not your fault, and arm yourself with all the information you can for your sake and the sake of your baby and any children you have in the future.
I trully wish you the best and hope that all works out well. Please keep us informed of your trials and what the MDs find out. I hope that I haven't offended you with the above information. I just wanted to share what a year of research and MD shopping has yielded for me.
If we learn by our mistakes, I am working on one hell of an education.
My thoughts are with your little baby. I know that you feel powerless now, but being with the baby as much as you can is all you can do---I'm sure the doctors are doing their best for him, and trying to figure out what the best plan is.
It really might have had absolutely nothing to do with thyroid ---sometimes horrible things just happen...............there's not always an explanation, although our hearts are always searching for it. I once read a book, when bad things happen to good people, it really got me through a very challenging time in my life........I hope your baby does well.....
Sending my most positive thoughts and wishes to you and your sweet babe, Storm.
There isn't a mother on earth who hasn't felt guilt when something went wrong with her child. There are but a minimal few cases where such guilt is deserved. You know in your heart that you didn't cause this; now your head just has to catch up with your heart.
My own firstborn arrived 2 months premature. I had shoveled snow less than a week before his birth, so you can imagine what terrible thoughts I had about myself for doing that. His wonderful neonatologist assured me several times that I had nothing to do with it... That things just happen sometimes... as Reece says, too.
Letting go of that guilt as soon as you can will help your son more than holding on to it ever will. Don't neglect your own health; you'll need it to be strong for him. I really, really wish this hadn't happened to you and him, Storm.