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…
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.
Congratulations on your engagement. Whether your pregnancy works out or not, I am confident that you and Daniel will be strengthened and made better parents by the experience.
Do you know, when I was pregnant with Nathaniel, Mark was off building our house, and we joked to one another that if we survived the experience of long separations during my complicated pregnancy (while I was also keeping tabs on Mark's tween-age son and daughter), there would be NOTHING we couldn't handle? That was, of course, before Eric, before Eric's diabetes, before I became unemployed and uninsured... What seemed to us at the time like a herculean task now looks like a road bump. You'll get through this. I often look back at the day Eric was diagnosed and say, "That was the worst day of my life, and I hope it always will be." So... whatever else happens, I am praying that the worst day of your life is already in your past.
BTW, re: the insulin pump... what I have done for Eric is sewn a pocket onto the back of his PJs. He is a side-sleeper so it doesn't interfere with him there. We also stack the pillows up pretty thick so that on those occasions that he does roll onto his back, the pump doesn't press up into his spine because the (soft, not firm) pillows are there to absorb it. I've also heard of some people putting the pump into a "huggy pillow" so that it is always between their arms rather than on their body. Either one has possibilities... although it will not help with the problem of alarms. If you have a Medtronic pump, you could consider getting their CGM Sentinel device — it's like a bedside alarm clock only it is wirelessly connected to the pump. The idea is that it can show the pump's CGM readouts without having to actually look at the pump (which is a very handy thing for parents who do not want to spend their nights in the child's bedroom!)
I don't know you at all, but I wanted to say that I am so very sorry that all of this is happening, and so glad that some good things have come of it. As a fellow Oakland diabetic lady thinking of having children in the not-too-distant-future I am thinking of you and hoping for the best, whatever that turns out to be.
And now for something way less important: I often put my pump in the band of my underwear at night and turn it on vibrate. I feel the vibration more easily than I hear the alarm when the pump is under the covers, and it seems to stay put and wake me up when it is there. Sometimes it slips into my underwear, though-- definitely, ahem, wakes me up if an alarm goes of when it is in there.
I'm saddened at your request to decline religion in your decision about this child. My prayers are that you will see that this gift from God is being given to you and your boyfriend. God does not make mistakes. He makes miracles. Talk to Him everyday. Ask Him to help you have peace and courage to get through this pregnancy in the best health possible.
God gives "special" children to "special" parents for a reason! Congratualtions!!!!
I didn't read all the replies. I am also so sad to hear of your turmoil. I had SUA with my 2nd baby. Although we did have an otherwise normal ultrasound and her heart looked fine, it was her kidneys the doc was worried about. We were told that even with an otherwise normal u/s, the chance of a baby with SUA being born with kidney function issues (which can be of a varying degree)is 20% which would be one in every 5 babes. We were lucky. An ultrasound when she was 24hrs old confirmed healthy functioning kidneys, although slighly smaller than average. She turned one in October and we have not had issues. Our OB did tell us that when SUA is combined with other organ abnormalities seen on u/s that the outlook becomes much bleaker. I wish you peace and compassion with whatever your decision may be. Much love.
Thank you, Jen....