Surprise pregnancy at 13 weeks, Type 1, 33, prognosis NOT good. Please help-- we are heartbroken

Hello All,

I found out that I was pregnant on December 10th and that I was about 12 weeks along at that point. My A1C was at a 8.9% and I was on NuvaRing birth control at the time. Despite the protection, I became pregnant and when we learned the news, my fiancee and I were shocked but filled with JOY.

The happiness came with fear, and I immediately informed my doctors and made appointments of which I have had six in eleven days. My doctors tried to reassure me with scans, blood tests and statistics that it was more than likely that I would have a very healthy pregnancy. I had three sonograms that all had great results— everything looked good. My CDE pointed to a wall covered with photos of beautiful, healthy babies and said, "You see all those babies up there? A lot of those babies were conceived by women with high A1C's and are just fine. I don't want you to worry".

Yesterday morning I was surprised to see on the monitor that we could even identify the sex of the baby already— a boy. I arrived at yesterday morning's appointment feeling scared and vulnerable, and left feeling safe, empowered and reassured that my baby and pregnancy were SAFE. We were sent home with our third set of ultrasound photos of our new little boy and we cried with joy.

Additionally, we decided to do a CVS diagnostic yesterday to get early information about problems such as Downs and Spina Bifida. I was all smiles when I went in for this procedure, and they laid me down on the table and set up the sonogram for the fourth time. The doctor came in and completed the procedure, which seemed to go just fine.

As it turns out, they were not fine at all.

When he was done, he lowered his gaze and explained to my boyfriend and I that they had found some abnormalities in the fetus while doing the ultrasound.

Where the ultrasound this morning was showing nothing of concern, this new one showed evidence of a stomach that had developed on the right (wrong) side of the baby's body; I believe this is called Heterotaxy. There were also concerns about the heart and what looked like Hypoplastic Left Heart Syndrome, as well as the fact that the umbilical cord only had one artery flowing through it instead of two, called "Single Umbilical Artery", or SUA for short..

He explained to me that this combination of problems was very serious, and reccommended that we wait two weeks to do another ultrasound when the baby is larger and more can be seen.

At that point we may need to make the decision to terminate the pregnancy, and it appears, at least at this point, that an abortion will be necessary the first week in January due to these horrible discoveries.

We are crushed, absolutely heartbroken. We had so much hope and now it is gone. I know to be grateful, I know there is hope, but the feelings I am having overwhelm any level of hope or gratitude now.

I am furious that this disease has destroyed my life for nearly 23 years, and that now it very well might take another life from me, from us. I feel like a failure as a diabetic and mother.

I feel unlucky…

The fact that I became pregnant on steady birth control is a huge statistical chance in the first place, and then you add all of these potential complications—(and yes, these are the types of complications you get with a surprise pregnancy on less than ideal— "but it will be fine!!!" Type 1 Diabetes) it is MINDBLOWING that I am so unlucky. Not to mention the T1D itself— not even in my family, so statistically quite unlikely— and unlucky.

Now it is likely that we will spend the holidays not celebrating with family, but recovering from a medically necessary abortion and a broken heart.

We are not religious people, and our sense of morality in this situation comes from a place of concern for the level of quality of life for this little boy.

If what the doctor says is true, he may not even make it a few days out of the womb. He would probably need several heart surgeries during his short life, as babies and children typically do not handle this well.

We are devastated.

If you have any information that can help, please send it to me…
Specifically—

If the Hypoplastic Left Heart Syndrome is suspected on an ultrasound, is that a pretty reliable diagnosis? If so, is there ANY POINT in waiting the two weeks, or is this kiddo's heart just too broken? I understand that this does not fix itself.

The stomach issue seems like something we can deal with, but has anyone seen this in combination with the HLHS and/or the SUA? What was your experience? I understand that there are varying degrees of this complication, and that it can also mean that other organs are reversed, "wired" incorrectly, and/or missing completely.

Thank you for any help or advice you can give. I would like to respectfully request that we keep our religious beliefs out of this conversation as they will not be part of my decision making process at this point.

If this doesn't work out, we would like to begin trying to conceive again as soon as possible; I have more than a month and a half of awesome blood sugars under my belt now and I hope that we can keep this trend going and have a healthy baby the second time around if that is what happens. Any advice on this would also be helpful.

Thank You

this is heartbreaking, so hard to imagine how painful. my thoughts and prayers go out to you.

I agree that's a heartbreaking story. I'm older now but, when our friends and we were in our "childbearing wheelhouse", I had several friends and acquaintances run into similar conditions who made similar decisions. On a positive note, all three of the people I'd known in that situation subsequently had children who are happy and healthy now!

I'm not sure of the answers to your specific questions about the conditions.

i dont know that much about prenatal "anomolies" i do know alot of woman who have been put through hell expecting the worst requested terminations ect to give birth to a totally normal baby. i am not saying dont listen to medical professionals but wait it out with garded hope there are some things that can look bad on ultrasound that can turn around ... what would our mothers be doing at this point in gestation worrying about morning sickness and the color of the nursery. i dont mean to gloss over what was discovered but keep an open mind and heart and maybe a second opinion without getting too attached to the idea of being a mom just yet... my heart goes out to you and i bet none of this has anything to do with your diabetes control.. be kind to yourself and stay open to all posibilities and most to the love that is around you. blessings, amy

I know this must be a crushing blow to you and your fiance. Perhaps it is too early to completely assess the situation. I would definitely wait two weeks and have another ultrasound. Also, get an independent second opinion quickly, if you can.
i am an older lady with a lot of life experience. There were two young couples in my own family with situations very similar to yours. They went on to have healthy children. These things happen randomly. I wouldn't blame the diabetes. If anything, your having diabetes may have caused the doctors to be extra careful with tests and ultrasounds early into your pregnancy. The earlier you know about potential problems the better off you and your fiance will be. My thoughts are with you during this difficult time.

I would wait the two weeks and get another assessment. It can't hurt, at this early stage, to be absolutely sure of what you're dealing with. I am so sorry for your stress and heartbreak.

I'm so glad you told us this story. You can know there are a whole lot of friends here who are thinking of you and sympathizing.
It looks like you have a good doctor who is giving you good, gentle and appropriate advice. It takes time to get through the pain, the overwhelming sorrow, and such flinging of emotions.
Maybe you can look forward to knowing that by the time school starts up again, you'll have some information that helps bring you both some degree of calm.

Keep you head up…they told me and my wife our son had spinabifida. We were so scared. He turns 7 this Valentines Day. I will keep you in my prayers!

I am so sorry. First and foremost, you and your spouse have to make the decision that is best for YOU. People love to spout off about "morality" and what they think you should do, but you would have to watch a child suffer with severe health problems and provide the financial and physical support necessary in such a situation.

I have known two children with hypoplastic left heart syndrome (I spent years working with kids who have developmental disabilities). Both children underwent multiple open-heart surgeries and both had significant developmental disabilities (cognitive disabilities, developmental delays, physical problems, etc) as a result of oxygen deprivation during the procedures (one of the children had also suffered a stroke following surgery). In each of these cases, the congenital heart defect was the only issue they had at birth. Last I knew, one of the kids was entering heart failure as a teenager.

As for the role T1D played in this - yes, having a high A1C can increase in the risk of certain congenital abnormalities. BUT, plenty of children are born with these defects when the mother DOES NOT have diabetes. Each conception is gamble and the reality is that we just don't know what causes a lot of these congenital defects. More conceptions than we realize result in some devastating congenital or genetic abnormality. That's just how the process works. I am so thankful that we have options in these situations. Knowing beforehand that a problem exists can save a lot of suffering for everyone.

If I was in your shoes, knowing what I know, I wouldn't hesitate to have an abortion. We are actually in the process of trying to start a family right now and I know with certainty that should I find out the child I'm carrying has an issue, the pregnancy will be terminated. No discussion, no hesitation. I spent years watching kids with developmental disabilities (and their families) struggle. They struggled financially and emotionally. Other children were forced to bear the burden of having to take care of a sibling who would never be independent. It's a hard life.

As for birth control failure - it happened to me once too. Despite taking the pill faithfully, I ended up pregnant at the age of 20. I ended up miscarrying the day I was scheduled to undergo an abortion. My health at the time was not stellar and I was in college with no means to support a child. Birth control failures happen. The pill is 99.5% effective, but as an OBGYN told me, someone has to be the 0.5%.

Hello, Underdog:

I'm not going to mention anything about praying for peace and guidance but, rather, get yourself in a quiet place with no well-meaning family, etc. and quietly review your basic principles that guide your lives. Do what feels like it is the best fit for your peace of mind and your basic lifestyle principles and you can't lose.

I wish you all the wisdom you and your loved ones can muster up.

Lois

Very sorry for the devastating news & the heartbreak you're both going through from elation to utter sadness.

Asked an ultrasound tech friend with 25 years experience. Of course, intrepretation of ultrasounds is dependent on the skill of the doctor, but she said ultrasound is reliable for detecting Hypoplastic Left Heart Syndrome. She also said mothers who were her patients went on to have other healthy babies.

You can request another radiologist review your ultrasound. A second opinion might answer your question about waiting two weeks.

Anger is a normal reaction & who wouldn't be? Hard to not blame yourself, but that's undeserved. Please be kind to yourself.

Thanks, acidrock23.....that gives me hope! We are waiting waiting waiting....

Thanks for your thoughtful reply, Jacob's mom.... I certainly hope that they are wrong!

CaryJ, I appreciate your kind words, and we are hanging on... it just feels like FOREVER! We will see what they say next Thursday and I will post something to let you know. Thanks for the good thoughts, and for reminding me that this may not have anything to do with my diabetes. Thanks :)

We are waiting, waiting, waiting! Thanks for your kind words... keep sending good thoughts toward the West Coast! :)

Thank you Marie for sending the good thoughts... we need them.

Thank you, Leo2 for reminding me that I am not alone! I think my doctors are great too-- it sure would be nice if they were wrong, but we will have to wait and see. Thank you, thank you.

Congratulations on the seven years of success!! This is great news! Thanks for the prayers as well; we need all the help we can get. Your story gives me hope.
:)
Lauren

MyBustedPancreas,
Every time I see your name on here I giggle. Those damn pancreases (hmmm... I have never had to pluralize that.... I don't know if that is correct and it bothers me as an elementary school teacher! :) Your reply is so thoughtful and I have read it many times and very carefully. I appreciate your honesty and I think we are on the same page here in Oakland. Know that your words are a source of strength and logic for me through all of this and that I am also wish you luck in following your dreams. You are right on.
-Lauren

Lois,
You are wonderful and your words are so healing to us, thanks.
Gratefully,
Lauren and Daniel