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
Replies to This Discussion
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Permalink Reply by kansan on -
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!
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Permalink Reply by Underdog on -
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
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Permalink Reply by MyBustedPancreas on -
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%.
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Permalink Reply by Underdog on
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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
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Permalink Reply by MyBustedPancreas on
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Glad I could help :-) I wish you the best. whatever decision you and your spouse make.
And as a fellow grammar queen, I too am curious regarding the correct plural form of "pancreas." Pancrei??
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Permalink Reply by Lois on -
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
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Permalink Reply by Underdog on
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Lois,
You are wonderful and your words are so healing to us, thanks.
Gratefully,
Lauren and Daniel
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Permalink Reply by Gerri on -
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.
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Permalink Reply by Underdog on
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Gerri,
It is so kind of you to talk to your friend-- I am trying to get a second opinion. This guy seems to really know what he is doing and comes with great recommendations. We are anxious to see what he says when we visit him again on Thursday-- and will keep you updated. I hope that we can see more on this ultrasound.
Thanks for your good thoughts; we need them.
-Lauren and Daniel
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Permalink Reply by Linda G on -
Ah sweetie....I'm SO very sorry to learn of this.
I can't say "I know what you're going through", no one can. All I CAN say is, many of us have encountered problems early in a pregnancy and things got better and were resolved.
This may or may not be the case...my telling you to not worry is ridiculous...of course you worry! Naturally! But I will say....take it one day at a time, be aware of changes, and wait for the other ultra sound. A second opinion may not be a bad idea.
Many hugs ♥
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Permalink Reply by Underdog on
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Hello Again,
It is amazing to see that there have been over three hundred views of my post; it means a lot to us that there are so many people out there that care and are sending us good thoughts or prayers-- we need all the help we can get at this point.
Daniel has had to work while I have Winter Break until the 7th of January when I return to the classroom and to work. The days spent alone are very difficult, and I try to spend time with my family who live only 20 minutes east of us. They have been very supportive. Our friends are amazing; people just seem to know when to step in, when to back off, and when to show up with fudge or other treats, sometimes just hugs.
Believe it or not, the fudge, for once in my diabetic lifetime, has not been a problem. It's like my body is allowing it to soothe my brain and my broken heart a little- -my blood sugars have been between 75 and 120 consistently with only a few short-lived outliers. I took an at-home A1c test the other day and in less than two weeks, my A1c dropped from 8.9 to 7.9 (a whole point!!) so I must be doing okay in this area. The insulin pump and CGM are great and I would recommend the combination during times like these and probably just ANY time. Thank you Minimed-Medtronic Paradigm Insulin Pump and CGM. You are totally awesome.
Last night I got a call from the genetic counselor and she said that the preliminary results (which she has never seen vary from the "final" results) of the CVS show no Downs or any other serious genetic problem after an extensive search. They also found a Y chromosome in all the DNA-- a boy. We had seen the ultrasound, but this confirmed it. CVS is another thing that I would highly recommend for high risk pregnancies; in my experience it was relatively painless, fast, safe and gave me peace of mind that I would not otherwise have. Thanks, Kaiser Permanente doctors and brilliant scientists and researchers. You are totally awesome, too.
The wait is excruciating, and each day feels like three. In fact, we were thinking that our appointment was last Thursday (two days ago) but were reminded that it had not been two weeks but one; it had just felt like it-- it feels like it has been several weeks!!!!!
On Thursday I go back for the next sonogram with the same doctors. It is very possible that they will send me home with more waiting to do because the heart is still too small to make a clear assessment. This is likely. We could also see something very clear, good or bad... and will have to cross that bridge when we come to it.
What we KNOW now is that the stomach is on the right (wrong) side, indicating heterotaxy. There is also only one umbilical artery instead of two (SUA) and the combination of these two findings is generally not good. The heart was very small and not well seen, but it did look like it may have been effected by the heterotaxy, but it was too soon to tell, hence the "come back in two weeks" plan. CVS reveals NO DOWNS or similar chromosomal issues preliminarily.In the meantime, I pass the time with our two dogs- an old wise one and a ridiculous puppy of 7 months. They keep me warm and are wonderful to cry into. Window shopping has also helped-- looking at little things and dreaming of "one day". I have gotten myself into quite the pickle now, though, as I naively "built my own" red Audi A3 with all the bells and whistles to the tune of almost 40K, just for fun, online. I have heard from three dealerships already this morning and my email box is filling up! I kindly explain to them that I am an elementary teacher and they stop pushing moments later, almost in mid-sentence, when realize that I am only IMAGINING the possibilities. It is still fun to dream.
Lastly, I should tell you that there are good things that have come out of this. It has become very clear that Daniel and I want to be parents sooner than later, and that if this pregnancy does not work out, we will try again as soon as possible. We also decided that we should get married, and the morning after Christmas Daniel asked me to be his wife.
I said yes.
Keep the good thoughts coming-- It might just be working.... and you give us enough hope to get through one day at a time.
Thanks for that.
With Gratitude,
Lauren and Daniel
Advice?? -- this darn insulin pump, (as much as I LOVE it-- and apparently enough because I have not thrown it against a wall or run over it yet because of its incessant beeping!!) is really hard to keep on one spot of my body at night. It keeps managing to work itself under my back or hanging off the bed where it can't get the transmission from the CGM. Sometimes I don't hear the alarms because I am lying on top of it and don't wake up! Any suggestions? Not only am I not getting much sleep because of the beeping but now some nights it is completely pointless! Thanks! :)
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Permalink Reply by Brunetta on -
Lauren wrote:Lastly, I should tell you that there are good things that have come out of this. It has become very clear that Daniel and I want to be parents sooner than later, and that if this pregnancy does not work out, we will try again as soon as possible. We also decided that we should get married, and the morning after Christmas Daniel asked me to be his wife.
I said yes.
Keep the good thoughts coming-- It might just be working.... and you give us enough hope to get through one day at a time.Lauren I do so admire you for seeing the positive outcomes of your unexpected pregaancy. And congratulations on your engagement. I beleive that All experiences happen for a reson, many times to prepare us for something even beyond; and more gratifying than we could imagine.
I , too, have worked with special Needs children, and the possible outcome of the organ problems that are currently visible may not be favorable. But mind yiou, I said "possible". No genectic problems were noted. You do not know how your lovely little boys heart has or been effected, if at all., Keeping you both in prayer for strength, wisdom and peace.
As for that MM pump and the nightime dangle, I personally wear it either clipped to a sports bra on the side, or in a baby sock pinned to my pj's. I push a small amount of tubing in the baby sock or in the sports bra, and I have no tangles yet. I do hear the alarms at night, but I guess it is because I also have trained my ears to it. In have learned to look at the beeping CGM alarm and judge what needs to be done. If it says I am double atows down from a lowish High, I test to confirm, and may readjust the basal. If it is double arrows , but still way out of range,down from the treatment of a monstrous high spike ( 250++)that followed a too much and improperly bolussed late night holiday night snack, I may test, but generally ignore it and roll over, and am generally in range in the morning. You wil get used to both the angelic and The devilish beeping of the cgm.LOL (Lauren, I am not hypo unaware, Your diabetes May vary) Agsin keeping you and Daniel in prayer.God Bless,
Brunetta
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