Babies with defects?

[Katie&GraciesMum]

Does anyone have any experiences with babies being born with birth defects?

I have been type one for nearly 10 years and just had my second baby. My first pregnancy was on my pump and was brilliant, good control the whole time.
With this pregnancy my pump failed and I ended up in ITU with DKA. I was in hospital for a week at 32 - 33 weeks gestation. I delivered at 36 weeks after developing excessive amniotic fluid and my baby was 10lb 1oz! She is still in SCUBU and :

+ her heart is in the wrong place and all the veins go the wrong way but to the right places - so it works
+ she has a lesion on her lung that will be monitored and possibly dealt with when she is four or five
+ her stomach was in the wrong place but was moved when she had abdominal surgery
+ her gut was twisted and has been straightened through surgery
+ her appendix was in the wrong place so it was removed in the above operation
+ her spleen is in the wrong place
+ her kidney or liver is in the wrong place (there is so much going on I can't remember which it is sorry!)
+ her lower spine may be twisted, once her tummy is better she will have a scan to see

I knew about heart defects and the possibility of cleft lips and palates but not all of this! Apparently it could be a genetic disorder or diabetes, we are waiting on the genetic test results but the doctor implied it is more than likley caused by my diabetes.
Did anyone else know about these issues? I thought I was up on the risks but all of these have come out of the blue! We haven't even asked about her reproductive organs yet - we daren't!
I do think these risks ought to be publicised more - especially as I thought I had good control before conception.........

 

[sofaraway]

Firstly I want to say I'm sorry that you and your baby are havign to go though all this, and hope she is receiving the best care possible, thinking of you and hope you have good support around you.

I know that the risks are higher in people with diabetes, but I understood that having very good control almost elimiated those risks. It's hard to tell because I know a women who had A1c's 13-15 during pregnacy and deleivered a perfectly healthy baby.

if you did have good control before conception and during the early pregnancy then I wouldn't have thought that the problems your child is now facing are not due to the diabetes but other factors and would be facing these whather you had diabetes or not. Having DKA obviously isn't good in pregnancy but I woudl ahve thought that these defects would have already happened by that time in the pregnancy.

best wishes to you and your little one

 

[lorrie]

i tryed to find information when i was pregnant 3yrs ago it seemed everthing was connected to diabetes.i had my son at 33wks he spent some time in scubu lots of tests and information overload but he is now a healthy 3yr old terror.im surprised they didnt see anything on her scans.but i agree with sofaraway that it may other factors involved.she is in the best place and it is amazing what they can.all the best to you and your little one and keep in touch

 

[Jenny]

OK - now I am terrified - I am in the first trimester of pregnancy, I had a miscarriage first time around. I am a T1 on basal bolus, I have had diabetes for 34 years. I have been trying to get on a pump forever as my bs do go up and down - but my HbA1c always levels out - so because my readings are OK - no pump (and I have been monitored for a year). Anyway - to date my sugars are running to high - and despite best efforts not levelling out. I am so scared about the effect this is going to have. Also - you are given NO additional information at all about dealing with diabetes during pregnancy and the information on the DUK site is so rubbish it is unbelievable. On here I have learnt that my levels are likely to go high in the 2nd and 3rd trimesters if I get that far. But mine aren't that great now - and are swinging.
I would be so interested to know the results of the genetic tests. I know there can be complications - but even getting information on those is difficult. I have never heard of so many due to diabetes.
I really hope your daughter has a better time from now on and if I do get through this and have a baby (fingers crossed) I am going to write a website about what to expect. I want to cry with frustration.

 

[sofaraway]

Jenny are you not under the pregnancy clinic at your hospital? I know that people are seen every 2 weeks, even if they have great control because they want to keep such a close eye on pregnant diabetics. they should be giving you lots of advice and information.
try not to panic it will only send your blood sugars up. Your blood sugars might be higher than you want but you can only do your best and i'm sure you are doing all you can.

 

[Jenny]

I am awaiting until I get past the ten week stage (end of next week) before I go to the doctor - as last time I started bleeding at 11 weeks (the foetus had stopped at 7 weeks). Last time I was given no advice form my doctor at all and hadn't even been booked in for the 12 week scan and had to hassle about that. I have just moved to a new area and registered with a new doc - which I don't hold out a lot of hope for - as they offered me no diabetic nurse or clinic to attend - but I have just registered and have had no need to see doc yet for meds - so maybe it will all come up when I go to see them next week. The only thing the nurse that did my new patient check did say was how many blood testing strips I get prescribed was a lot! and I would have to talk to the doc about it. I have used the same amount for the last 15 years - and test 4 - 8 times a day - and am not prepared to change now - especially if the pregnancy continues!! Not holding out a lot of hope for good diabetic care. But then I have always taken responsibility for it myself - which is why I am finding the lack of info very frustrating. Hopefully it will change once it is 'official'. 🙂 Ever the optimist (usually!)!

 

[tracyp]

defects

All Defects should be picked up at your 20 weeks Scan. Diabetes does increase risk of still birth ,heart defcts and Downs and miscarraige but you should have been on 5mg of folic acid which lowers risk from conception. Ensure care is done as per the docs you get. Every doctor Likes to blame Diabetes as if they have given poor care it is a cop out. when i miscarried at 21+3 weeks the doctor told me it was me been diabetic and bad control that caused it. That turned out to be c**p, it was there lack of care that left me to be in labour at that stage. they had seen me days before and obs woman said dont need to bother with wee sample and my Severe back ache was normal, told them my urine smelt and still she ignored me. My Nurse i work with thinks i could have been in prem labour and they could have stopped it as she was stopped from prem labour at 20 weeks with her son in the 80's when she was a midwife. Keep on top of maternity care as it is at the bottom of the pile for money in the NHS.
I hope you and your baby come through this ok somewhere there is the stregnth to pull us through.

TRacy

 

[gerryberry]

I wish you and your baby all the best (katie&graciesmum) I hope you get the answers you need very soon. It is hard enough being preganant with diabetes never mind all the worry afterwards too.Thinking of you and your family.

Jenny
I hope this pregnancy goes well for you. I had my son 2years ago and he was born early(i was given steroid injections at 30weeks) and spent time in the special care unit for 2weeks. he is now healthy and normal so to speak! It is one of the most traumatic times I experienced was being pregnant and diabetic, an emotional rollercoaster and extremely hard work, I must say it is worth it though, although I am not sure I could go through it again. I had 3 girls before being diagnosed and there is no comparison to being pregnant and diabetic. I was fortunate though to have a great team of support at the hospital/clinic, they were very honest and open about the complications that could be in front of me, lots of tears but you really need to make sure you get the right support, I really hope you have a better team in your new place and wish you all the best.

 

[skidmoreec]

Hi - there is a good chapter in the book 'think like a pancreas' that tells you what to expect from each trimester. From memory (please don't quote me!) it says your insulin requirements drop in the first trimester and then gradually increase after that. I'd recommend reading that chapter in order to adjust your insulin....although i haven't been through a pregnancy (yet) we are currently trying. I'm on a pump (I had to write to my MP to get one) and also petrified - I think I need to just grit my teeth, do my best, and hope for the best.

keep fighting for the care you need.

 

[SarahB]

Blimey - *hugs* to all. For anyone thinking about a pump - my nurse at pre-conception clinic said unless it was extreme circumstance they wouldn't put anyone on a pump while pregnant as you need to ride high for a while, which of course could affect development

 

[sasha1]

Hi, I'm so sorry to hear you and your baby are going through this, I am sure you will both be receiving the best care and support possible. Sending lots of love and hugs.
Best Wishes
Heidi

 

[tracyp]

Hi Sarah B
You are never left to go high they start you off on pump by checking the amout of insulin you have every day this is them adjusted to give you the dose per hour then you bolus same amount of insulin as you do for carb counting. I now i have days when i am busy and can adjust the amount that is pumped in which gives my avg bs at 6.5 to 7 over 4 weeks. When on insulin and pg i found i had stored the insulin and would kick in a large dose at once and sugars would drop again same through the night in 1st tri in 2nd it started to even out but the 2 hour test after food was always 10+ then 1 hour later would be 4 hour after need to top food up to give insulin something to work against. you also do fasting tests to make sure the right amount of insulin is given. I have been diabetic 33 1/2 years and this is the best thing ever. If you have to go into hospital for DKA they put you on a pump to regulate the sugars and ketones which when you come out you have perfect control then most people find it slides a bit again due to insulin delivery been different. the canula you are given can not harm the baby as they are just the same size as the pen nieedles you use when pg. check the pump section on here lots of info there.
Love to Kaie hope things are ok
No one ever tells us the dangers of been pregnant but i am trying again, i know a lady who tried 6 times to get a live birth she never gave up hope. We all think it is easy but it is not and one of the most underfunded areas ever in healthcare