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

SugarFreeLC
By SugarFreeLC Latest Reply 2013-02-05 13:36:25 -0600
Started 2012-12-21 10:07:08 -0600

Hello,

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


41 replies

MrsEd
MrsEd 2013-01-10 07:15:05 -0600 Report

I want you to know that you are in my prayers. I wanted to share something with you that might lift your spirits. I have a friend who found out she was pregnant at 40. The doctors practically scared her to death, telling her that her baby had so many factors working against it. After a couple of tests, they had her thinking that the baby would be born with Downs and other conditions that would make the baby's life difficult. Long story short, she decided to keep her baby and when he was born he was fine. No Downs or other conditions. I do believe in the power of prayer.

AllisonK87
AllisonK87 2012-12-31 12:40:46 -0600 Report

I hope all is well, I am a type 1 diabetic of 20 years and i am 25 years old these kind of stories give me a reason to lower my A1c. I will keep you and you family in my thoughts.

SugarFreeLC
SugarFreeLC 2012-12-29 13:15:49 -0600 Report

Thank you both so much! I posted an update so keep the good thoughts and prayers coming! We need all the help we can get!

SugarFreeLC
SugarFreeLC 2012-12-29 13:04:58 -0600 Report

Hello Again,

It is amazing to see that there have been over one hundred fifty 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! :)

Caroltoo
Caroltoo 2012-12-30 22:49:36 -0600 Report

Insulin pump: in the last year someone on here commented they sleep in a tee shirt which they turn inside out so that they can fasten the pump in the tee shirt pocket. So put your thinking cap on and come with a sexier looking version and sell it to Sensually Yours and make some extra cash for the Audi A3!

red flower lady
red flower lady 2012-12-28 02:00:04 -0600 Report

Hello, I am so sorry to hear the pain you are going through. Being pregnant is such a joyful and frightning experience on a normal day, but to be put in your position is a place I would never wish for anyone to be in. I am type 1 and had four children. The first was healthy and she is starting grad school, the second was born with a hole in his heart and small, but after treatments grew strong and joined the Air Force, 6 yrs so far. My third was a problem pregnancy as we had different blood type and my body treated him as a foreign object throughout, lost his twin. He was born very early with under developed heart and lungs and needed transfusions. He grew to be 5'10 and built like a linebacker and on to college. My youngest was also born very early, started trying to have her at 29 weeks and she was born with pneumonia on top of it all. She is healthy now beside having asthma, but not bad and just finished her first year of college and has also been doing MMA(mixed martial arts). Oh yeah, the last three were all conceived using birth control. Someone has a sense of humor!!! I was given the talk about making a decision as well. I am so blessed to have them.

I can only say that you do all the testing and get the extra opinions by specialist who treat these conditions and go from there.

If you still have to decide,you will know what decision to make as you will feel it in your heart and live with that choice. Nobody has the right to pass judgement as it is not their decision. We all wish the best for you and your son. Don't lose hope yet.

SugarFreeLC
SugarFreeLC 2012-12-29 12:59:05 -0600 Report

red flower lady,
Thank you for your thoughtful reply. It gives me hope that you have had success with all of this MORE than once! :) We will keep you updated, and thanks for the support- we won't lose hope.
-Lauren and Daniel

ConnieMarie
ConnieMarie 2012-12-25 07:01:12 -0600 Report

HANG IN THERE…have faith your baby will be ok…don't always listen to doom & gloom…doctor's aren't God…I had 4 strokes & not suppose to be walking but I am.

Caroltoo
Caroltoo 2012-12-25 01:10:43 -0600 Report

I just want to say how sorry I was to hear you share this serious situation about your son. Like Set apart, I have worked as a teacher and as a therapist with prenatal moms and children up to age 18 over the last 40 years and find them such a source of joy.

The decisions we make as parents are so crucial to our children's and our own well being, as you so obviously know with your professional background. You are rightfully very concerned about how your choices will affect your son. I've always felt blessed that I never had to make this painful choice, knowing that whatever decision you make will have repercussions throughout your life.

I would not presume to second quess what choice is best for you, but would suggest you take as long as you can to make your decision. Gain all the information your doctor and the tests can offer you before you finalize the decision. Know that we are all concerned and supportive and wishing you the very best in this tough situation.

SugarFreeLC
SugarFreeLC 2012-12-29 13:02:43 -0600 Report

Thanks, Carol. I appreciate very much that you understand my perspective as an educator and someone who works closely with children.
Thanks for the support, we certainly don't feel alone.
-L&D

Nick1962
Nick1962 2012-12-22 20:19:08 -0600 Report

I have a form of late stage Lyme’s, making any and all medical tests suspect before verifification. At one point I was told my liver was shot, as well as my pancreas. Yeah, 7 years later I’m still here and a controlled T2. I can’t possibly know what you’re going through, but I’d test, test, test as much as I can afford up until that decision had to be comfortably reached. I’m not convinced being diabetic has anything to do with your situation, but I hope in the long run the outcome is positive. Thoughts are with you.

SugarFreeLC
SugarFreeLC 2012-12-23 11:07:20 -0600 Report

Thank you, Nick. I am so glad that things worked out for you… I have a cousin who had a very similar experience with Lyme. She is very fortunate to have an exceptional team of doctors and the priveledge of having enough financial support from her family to survive. She has to fly from Miami to Chicago I believe a couple of times a month to get the latest treatments and see her medical team. She has a very severe case, but I can only imagine what it is like to have that AND diabetes! Good for you for hanging in there! It is tough and this disease SUCKS. I would use more "colorful" adjectives there but I figured I would spare everyone the inappropriate language! I will continue to test, test, test myself into oblivion— I have a CGM (Continuous Glucose Monitor) attached all the time and it beeps… and beeps… and beeps. I am glad it is a tank of sorts because it may be thrown up against the wall or run over by my pickup a few times before a baby finally joins us! :) Your kind words are greatly appreciated. You are also in my thoughts. Love to you and yours during this Winter Season!

Nick1962
Nick1962 2012-12-23 18:39:26 -0600 Report

Yeah, i count my blessing that all Lyme's has given me is a hassle with daignisis' from time to time. Another in our party did get it full blown like your cousin and basically can only work 4 hours at a stretch without having to sleep. He has a job that allows him to work 8-12, then sleep and come back on 4-8. It is a hell of an existence but he does it.
I'm also thankful I'm not female and have to endure what you are in addition to being diabetic. Bringing another life into this world is such a responsibility. Be my guest, swear your head off it it helps, i think we'd all understand.
I'm not overly religous, but I think we get put in situations that only a select few of us can handle. Whatever the outcome, I'm guessing you're the right one to handle it. I'll put in another prayer for your strength and wisdom to weather the challenge.

Set apart
Set apart 2012-12-22 06:41:02 -0600 Report

I can only say that I will keep you in my thoughts and prayers. I work with infants and children with disabilities and it is the most fulfilling work that I can do to give back. I have T1 also only diagnosed in 2011 at 48 years old it is the most difficult thing I've been through and I know it is only the beginning so I praise you for all you've been through! Best wishes!

SugarFreeLC
SugarFreeLC 2012-12-23 11:00:33 -0600 Report

Set apart, thank you for the kind words. I wrote you a very thoughtful response but hit some stupid button on my laptop and it all disappeared! Sheesh!
Anyhow, I will try to recreate it and remember what I said despite the "pregnancy brain" which has left me feeling mentally challenged!!!! :)
I am a teacher and also work with children with disabilities. My mother has been in Special Education (moderate to severe) for nearly 40 years as well— I have seen it all from minor to catastrophic issues in kiddos and adults. I deeply respect the opinions of others and what works for them, but we have thought about this a lot and will continue to; we believe that, depending on the severity of the problems, it is possible that it would be MORE immoral to bring a child into the world that would suffer greatly or have a very short life. It is wonderful to hear these stories of success from others, but I have also seen the result of things when it doesn't work out. We will make a careful decision based on the most accurate information we can get, the best doctors we can find, and the potential severity of the problems that this child may have. We are both very smart people and I know we are capable of making the right decision for our family. THANK YOU for keeping us in your thoughts. Lastly, THANK YOU for being so kind and respectful; it is much harder for me to read these comments and take them carefully into consideration when people are bringing their personal religious beliefs into it (as much as I respect and love that everyone has their own ideas that OBVIOUSLY work well for them!) than if they leave that part out. In fact, I think that this creates a significant rift between believers and non-believers, and I firmly believe that if "either side" (as much as I hate to put it that way, because it's not really that simple at all!) were more accepting of each other, and didn't try to change others' minds so much, people would actually be MORE receptive to coming to it (or not) on their own! I am a very moral person, but did not learn my morality in churches or temples or mosques… I got my moral compass from a family that showed me laughter and love- and taught me to care about others no matter where they came from, who they are, or what decisions they choose to make. I am so grateful for these lessons, and I am appreciative of the fact that you are so respectful with your words; maybe you are very religious yourself but you were kind enough to respect my request. Guilt and shame are not going to help us right now. What we need are nice people like you pulling for us and a great team of doctors who are willing to answer all of our endless questions! Thanks again, you are wonderful! We will keep you updated. Love to you and yours!

lavenderchild
lavenderchild 2012-12-25 19:22:29 -0600 Report

My heart goes out to you at this time.. Sending lot's of hugs and love your way at this extremely hard time for you…

jayabee52
jayabee52 2012-12-22 06:08:28 -0600 Report

I like Harlen urge caution in aborting the boy.

As manapua suggests I would recommend waiting for a while and determine if there truly a is problem, and what would be the degree of the problem. Even if you are sure that this abortion is the best course to take I would expect that this child's death at your Drs hands would be devastating psychologically to the both of you, especially for the mother. So should you choose to have your son put to death, you are going to need some time to heal emotionally. I expect that you have already grown emotionally attached.

I had some friends in a congregation to which I belonged, and this couple married later in life. I believe she was in her 40s. She got pregnant and had their baby in the normal 9 mos. They knew from tests that their son had heart problems but they chose to not abort him. He did have problems and eventually died, but they were glad that they gave him the best chance they could at a full life. They decided after a year or so, that they wanted to adopt a little girl and last I knew they were all happy with their new baby.

I also had been a Certified Nurse Aide and had cared for a boy with spina biffida. Perhaps he should have been aborted before birth, but I got to know him and he was a joy to be with and care for. I believe he had a better "quality of life" than other children who were born "normal".

Who is it which gets to determine what is an acceptable "quality of life".

James Baker

SugarFreeLC
SugarFreeLC 2012-12-23 10:33:56 -0600 Report

James, thank you for your response. I like Harlen too. I hope I am as lucky. We will see what God, or life, or whatever is in charge out there— maybe just nature— has in store for me. Let's hope for the best. I will keep you updated.

BUGME2
BUGME2 2012-12-22 14:37:08 -0600 Report

James,on July 16,2012,my Ggbaby was born with her brain exposed and her eyes and nose wasn't fulll developed,the baby Mom knew that something was wrong with the baby before she was born,the doctor advised an abortion,She said no!Because GOoD,has the last word!My Ggbaby lived for 14 hrs.My daughter(grandma)loved that baby up for those 14 hrs!The doctors also said that the baby would not react to our voices,well my daughter talked to her gbaby and that baby cooed,and interacted with my daughter,it was a blessing to have had that precious baby,that angel, to show us adults how to be strong! And even though it was so sad to see Tyrena Faith go,we knew that GOoD,DOESN'T MAKE MISTAKES,Because He sent us an angel,and that angel touched our hearts with over flowing LOVE!She is missed,but GOoD,needed her more!!She had life for 14 hrs,and then our little angel flew away into the arms of GOoD!!Now thats was the quality of life she gave us!And she will not be forgotten!!

SugarFreeLC
SugarFreeLC 2012-12-23 10:31:25 -0600 Report

Bugme2… (btw I love the name), thank you for your response. I am glad that your decision worked out well for your family.

jayabee52
jayabee52 2012-12-22 15:42:25 -0600 Report

We are shown over and over again that God knows better than Drs.

The Drs trying to spare some emotional pain to the parents counsels the parents to abort their baby but when they don't follow Dr's suggestion ppl get a life lesson they would not have gotten any other way. Thumbs up to you Bugme! And comfoting hugs to you at the loss of your precious little one!

manapua72
manapua72 2012-12-21 19:00:09 -0600 Report

When my wife was pregnant with our youngest she had a test done . Yet the doctor had miscalculated how far along she was due to this the test came back terrible . They told us all this negative stuff as to how messed up our son would be etc … They pleaded with us to consider an abortion … We said NO , as its something we our firmly against ( that's our belief though ) . We did a lot of praying & hoping … Later in pregnancy we find out test was taken at the wrong time … So results from first test were wrong … We went on to have a perfect little boy … Now this may not be your out come , but Sweetie there is always hope !!!!!!!!!!!!!! I wish the best for u !!!!!!!!!!!!!!!!!

SugarFreeLC
SugarFreeLC 2012-12-23 10:29:14 -0600 Report

manapua72, thank you for the kind words, especially the "Sweetie there is always hope!!!!!!!!!!!!!!" part!! It is funny, I am not sure exactly when we conceived either, so they are "guessing" about how far along I am. based on the measurement of the fetus' head during a sonogram. Two tests that were a few days apart measured at 11 weeks 5 days and the other at 13 weeks 2 days, which is pretty different. I greatly appreciate your words… I feel absolutely paralyzed as of now. I have a lot of people praying for me and sending good thoughts so I hope that helps; I think it does. Termination of the pregnancy will be a very LAST resort. It is important to us that we are realistic about what we can handle and what we cannot when it comes to a kiddo with such tremendous special needs. I cannot tell you how much I appreciate your kind words, and also your respectful response. It is hard enough to share this information without being judged by others. I am SO GLAD you made the decision you did, and I will need support through this, so I will keep your story close to my heart! Love to you and your beautiful, healthy family!

Casarni1
Casarni1 2012-12-23 11:10:13 -0600 Report

My daughter-in-law was diagnosed in her teens, she was told that she would never conceive, she did anyways. It was touch and go with horrible reports, told that both would die without an abortion. She was ready to give birth almost 4 weeks early, drs said she couldn't eat, she felt herself slipping, pleading for something and was told NO. My son marched down the hall of that hospital with his heavy marine boots and got food for her. The second pregancy went better because they knew what to ask and who to go to, I am the proud grandmother of two boys, the youngest has an IQ so high he has trouble concentrating. The older one has a very high IQ. Get a second opinion. A third if necessary. My family's prayers are with you.

SugarFreeLC
SugarFreeLC 2012-12-23 11:18:09 -0600 Report

Thank you, Casarni1. I have requested a sonogram for next week (1 week out, a week before the one they want me to wait for) for a second opinion. I have also contacted a different perinatologist. This is good advice, thanks. Keep the good thoughts and prayers coming, we need them.

Harlen
Harlen 2012-12-21 12:21:36 -0600 Report

first one test may not be good have hope
I have my hart on the right side and every thing is on the rong side
and I am fine .
Get you doc to read your test and see what he has to sey .
Hugs and best wishes
Harlen

SugarFreeLC
SugarFreeLC 2012-12-21 16:18:14 -0600 Report

Thank you, Harlen. I appreciate the kind words… I am trying to have hope. Truly, thank you.

Harlen
Harlen 2012-12-22 16:59:36 -0600 Report

We are here for you

SugarFreeLC
SugarFreeLC 2012-12-23 10:18:23 -0600 Report

Thank you, Harlen! The minutes seem like hours, the hours like days. I am hoping that you are right. Please know that I will make a very careful decision, and take EVERYTHING into consideration before making any big moves. I am hoping that things are not as bad as we think; I am guessing that is why they want to wait the two weeks and see me back when the baby is a little bigger. I will keep you updated. I need to figure out how to "friend" people on here, because I need them now!!! :) Thanks for everything, Harlen. I sure am glad you are here!

BUGME2
BUGME2 2012-12-23 11:59:33 -0600 Report

Hello SugarFree LC,My first Ggrandbaby was born with her brain exposed,her eyes and nose wasn't fully developed,the baby mom was advised to abort this child,and of course she didn't,Tyrena Faith lived for 14 hours,her grandma(my daughter)loved on her and talked to her,the doctors said that she wouldn't interact with anyone,but she cooed,and squelled when my daughter talked to her and loved on her,it was a sad time when our little angel,flew away into the arms of GOoD,I thank GOoD for those 14 hours.everything else was perfect and formed whole,I couldn't advise anyone on this subject,I just know that I would not have aborted my baby!GOoD knew her before she was formed inside of her mothers womb!He says this!Yes its hard to loose any child,any loved one,but an abortion will stay with you,wondering if you did the right thing,I pray that you pray on this,and seek GOoD! I too lost a baby in my fifth month at 16 years old,I still think about my baby!And I am now 60!So ask questions,talk to GOoD,PRAY.!!

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