Gastroschisis

I'm new to the site, so i'm not sure if this is where my post belongs. Anyways, I'm 33wks 5d prego, with my second daughter. I found out my baby has gastroschisis in Jan. It'd be great to talk to someone, who has been though the similiar thing. Time is running out, and I'm soo scared I've read so many stories on the web. Just wish baby would stay in mommies womb, where she's ok for now.

oh you poor thing..im sorry i am no help to you but i have watched plenty of episodes of Maternity Ward (discovery channel) and it seemed to be quite a common issue in america..and it was always easily fixed with no major issues.
I know this probably doesnt put your mind at ease at all but just remember your bubba will be in the hands of experts.
My son was born with hydronemprosis which is enlarged kidneys and had to have surgery at 4 months of age and the doctors were amazing.
Good luck to you and your baby

Yes Boychuck I hope all is going well for you. It's very hard being a gastroschisis mum I know and I cant wait to hear how you and your little girl are going.

ryansmum, gastroschisis is on the rise for reasons they do not know. I think the same thing is happening here in Australia. I am pregnant with a gastroschisis baby and I fit into some of the reasons, like having a low BMI when I conceived but they really cant say why it happens.

Well we had our third trip to John Hunter for a 28 week ultrasound and everything is looking good. The gastroschisis looks like it has not changed and there is no dilation of the bowel so far. :confetti: We met with two surgeons out of a possible six that will repair the gastroschisis soon after birth and they were really nice. We also had a look at the NICU and the very bleak looking birthing rooms (I have now realised the importance of taking small comforts like scented candles, music etc). But best of all our beautiful little boy is weighing in at a healthy 2lbs 8oz or 1137g. So all is going really well with our little one.

Great news. I am pleased everything is on the positive for you guys. There is one day between our due dates, so I have been keeping up with your news. Great to hear!

Jac

august...
Well she is finally here. Born on the 29th and 210am. I got discharged today, and well of course she is in the NICU. It's hard, really hard. She's doing good so far, and hopefully she only gets better. I'm sorry I'll tell you about it more soon, really tired. But hang in there and enjoy your pregnancy!

Hi Boychuck, so good to hear from you. Sending you best wishes and I'm sure your beautiful daughter will be home before too long. I look forward to hearing more when you have recovered and I hope you are doing ok being away from her while she is in the NICU. Thinking of you, you're amazing you did it!

Love August x

August,
Sorry it's been such a long time since I last replied. Great news on my end, our little angel, Brianna, came home from the hospital last Tuesday. Only 14 days in the Nicu and everything seems to be going as if she never had gastroschisis. YAY! Although those 14 days well long, very long. I'm so glad she's home and in my arms. My prayers are with you and your baby, if you have any questions at all, please ask. Take care.

Hi Boychuck,
Words cannot express how happy I am for you and your little girl Brianna. Wow 14 days in NICU must be a record for a gastroschisis! I can only hope things will go half as well for us. My little boy is doing great. Growing well and there is no obvious dialation of the bowel. I only have about 5 weeks to go and we are really excited. How did you give birth vag or c-s? Did Brianna have a primary or a staged repair? Did you see the bowel and what colour was it? Any tips on how to get through those days in NICU?

Keep in touch,

August x

Hi Boychuck,
Words cannot express how happy I am for you and your little girl Brianna. Wow 14 days in NICU must be a record for a gastroschisis! I can only hope things will go half as well for us. My little boy is doing great. Growing well and there is no obvious dialation of the bowel. I only have about 5 weeks to go and we are really excited. How did you give birth vag or c-s? Did Brianna have a primary or a staged repair? Did you see the bowel and what colour was it? Any tips on how to get through those days in NICU?

Hi August,
Just want to say thank you. I apoligize for not getting back to you sooner. With my two girls it's very difficult getting a free moment to myself.
Over here in the states the average for a gastro babies stay in the NICU is 3 weeks. My baby girl did very well so she came home in 2. But I didn't set the record. There was a couple whom had a gastro baby 2 or 3 years ago in the hospital where I had Brianna, and there baby was only in the hospital 8 days. I had my baby in one of the best hospitals in the country though, the presidents hospital. Hopefully your baby boy won't have a long stay neither.
I delivered Vaginally, they wouldn't allow me to have a c-s unless there was an emergency. After the baby was born the took her so quickly to clean her up to get her down to the NICU, it was hard to see her bowel. But to me it looked brownish maybe a little pink. But it's hard to tell she was covered in blood. (sorry don't mean to gross u out) They did let me see the baby for about 5-10 secs, long enough to let me see what she looked like and give her a kiss, and then they rushed her to the NICU.
Primary repair, they would have done the procedure within minutes after getting her stable but we had to wait on the surgern to get to the hospital. So he came and talked to after seeing her, He told me she looked great, so he decided no surgery, he just pushed all the bowel and the stomach back in her belly and then took the umbilical cord over the open wound so that they didnt need to be any stiches. They actually did it right in the NICU. He came back to tell me everything was good to go about 30 minutes later, and that I could go see her. She was 2 days old when I finally got to hold her. It was harder seeing them take her to the NICU then not being able to hold her, because I still got to touch her. LIke I said everyday we had good news that she was doing better and everything was going on track. They started her feedings at 1 weeks, slowly increased and a week later she was home. She had a 3 bowel movents, from what was left in her from me after puttin gthe bowel back in. Then she didnt have anymore until they started to feed her. I think she had a bowel movement within 24 hours of feeding. That was the best news besides when they told me she was coming home.
I wouldn't know what to tell you to make it easy to get threw the days at the nicu, yes we always had good new, but some days everything stayed the same, and i would asked when they would think she would come home and some nurses would tell me several weeks. It was the hardest thing I ever had to do, I think just about everyday I broke down and cried my eyes out. But what help me is looking forward to the next step, taking it from day to day. After the first week, and she started eating It was harder for me not to have her home because she was doing so good and wasnt home. But before I had her, I thought things would be alot harder, and I didnt think I would be able to handle it as weel as I did. But I did alot of praying, probably the most I ever did in the 2 weeks she was in the hospital, then in my whole life. I put all my faith in god, and he help me threw it, and I'm sure he help you to. I know you'll do find and so will your little boy, I'll be praying for you. Befor eyou know it he'll be home and you wont be getting any sleep, lol. Well goodluck. Please keep me posted,I hope I answered what you needed, if you have any more ?'s please ask. Take care of yourself and your little one!

I forgot, because of no stiches and they way they put her umbilical cord over her opening in my belly you can't even tell that she had gastro. It looks great, it's an outtie as of now, but the doc's said that within the next month or so it was be outwards. YAY!

An Update!

Well we finally got a date for the big birth-day, July 31st! Not long to go! Thanks Boychuck, I hope all is still going so well for you and Brianna. I cant believe she is over a month old already! It sounds really wonderful how her repair was done, I wonder if they would do that here if it was possible? I'll be finding out soon enough!

On our ultrasound this time the big bowel was also visable (usually just the small) and reported as dialated 1.6mm. :( I knew to expect a report like this at some point though!

But my little boy is growing so beautifully and he would have been a very big baby had I of been able to carry him to 40wks or over. He is already 6lb and will probably be a 7 and a half pounder when he arrives 3 weeks early! So at least he is big and very healthy!

I am well, pretty much all organised and waiting patiently, I'm really excited, ready to tackle my induced labour head on and finally meet my little one!

Hi. I just saw your post in the NICU section and posted there before I realised you have probably updated elsewhere. I had a gastro baby girl three years ago. She is now a very healthy very cheeky 3 year old. (She too had no stitches however she still has an outtie belly button which will be repaired this year or next. The surgeon is quite disappointed because he has only had to repair 3 out of about 60 children)

If you wish to hear our story or have any questions please feel free to ask.

August,

Best of luck, you are in the best hands where you are going. Ask for room 11 in delivery suite, it's not so bleak as it has a bath and a bit more room I found. We were there exactly 8 weeks ago ;)

I can't wait to hear how it all goes!

August. I have been wondering how you and your little man are going. I hope all goes well with his upcoming birth and his op. I will be checking back in on you :)

Hi Bindyangel and welcome to BB.

Thanks for your post, I would love to hear the story of your little girl, where she was born, how her repair was done etc, and how she has been in the last few years and anything else about your journey. I'm so happy all went well for you.

Thanks also Trish and Tara, and thanks for recommending room 11 at JHH! Do they also have a shower in room 11? I'm not sure if I'll be able to use the bath that much although I'd love to! The room DP and I looked at was quite bleak but was spacious and had a shower, apparently the rooms at the far side have a nice view of the mountains too which would be nice to look at!

Not long to go, I'm really looking forward to the whole experience and the day I bring my son home will be the best day of my life...

He is 2/5 engaged and has been really quiet for the last week. I'm also getting lots of braxton hicks cx now too. Up until now I've hardly noticed them at all, but I get the all day long now! It's a bit of a worry him being so quiet as he has been so active ever since I started to show at 16 weeks, so I'm actually going to call the hospital now to see if they will check him for me this morning.

Will keep you all posted, thanks so much for your well wishes it means alot to me.

Love August x

August, I hope all goes good today hun. Perhaps your little man is just having a sleep in. It's pretty normal for their movements to quiten down alittle as they get bigger. Not as much room in there etc.

You are doing the right thing though, if you are worried go and get monitored for a while. If nothing else it will put your mind at ease. :hug: to you sweety.

I'm sorry I didn't get to read all the posts. Wow, August, you will just about be able to see your little one!! How exciting and terrifying for you at the same time. I know part of me wanted to see my baby, the other part wanted me to keep her in my belly for ever as she was safe.

I truly hope everything will go by the textbook and I will be thinking of you!! (I know of a support forum for gastro if you ever want the link just let me know. Its based in UK and I'm the only aussie, but there are a few americans there too)

I'm sure things are just getting cramped in there, but it never hurts to go get checked.


Our story
I was induced at the Royal Brisbane at 36+6 days. They just started with the gel, but thats all I needed. 10 hours after the gel, I gave birth to our little girl. She was starting to get stressed towards the end, so they ended up vacuuming her out. They wrapped her belly up in clingwrap type stuff and wrapped her in a blanket and gave me a quick cuddle. She wasn't stressed afterall and got apgars of 8 and 9.

I was too concerned for them to take her down to the NICU and "fix" her.

They managed to do a primary closure without anaesthetic or stitches,just baby panadol. She was sound asleep less than an hour after the "surgery".

We got to give her a cuddle on the second day. It was so exciting to see tiny little fingernail sized poos when she started bowelmovements.

Unfortunately she had one incident that set her back a few days with the central line suspected of being infected, however she recovered very quickly and at 3 weeks we started feeds and were able to increase them dramatically so she was home at 3.5weeks.

We breastfed for 7 months, however her latch wasn't fantastic after getting used to only having a dummy to suck. She started solids at 4 months and LOVED and tolerated everything so very well. Of course I was so paranoid of her tolerating foods it would take me quite awhile to change foods.

She was also the most fanastic sleeper.

The only problem we had was the beginning of this year, she suffered very severe stomach cramps. She had gotten a bit blocked up in there (she needs to have a bowel movement every day) and the blockage actually caused a urinary tract infection as it was pushing on her urinary organs.

Apart from that, she can eat everything (though juice and sweet biscuits limited to only one in a day..they seem to cause a little stomach ache).

I'm excited and nervous about her belly button being fixed. I should be seeing our surgeon in the next few months.


Well sorry for the long winded story.

I really and truly wish you all the best.

We are home!!! Thanks so much to everyone who supported me here throughout the pregnancy I really cant say how much it means to me!!

Lucas has been home for three days now after only 16 days in NICU. He was born via emergency C-S on the 22nd July so I'm really glad that I presented myself to the hospital the day of my last post! I've posted my birth story on BB if you would like to read more about the birth.

My little man did amazingly and the surgeons were able to do a primary repair. He was in a bit of pain in those first few days but after that he did not need any pain killers at all.

It was really hard to see him so hungry, he almost sucked the teat right off the dummy but had no troubles latching on once he got on the breast on day 10. The long days (and nights) in NICU were harder for us than it was for him I think. He was so brave and we are so proud of him for getting through it.

We are all now home as a family and I am so thankful that everything went so well for us. It is just amazing what the doctors can do and he is perfect in every way. We are truly blessed!

CONGRATULATIONS. Wow, thats so great to hear and so glad you went and got yourself checked. How are you feeling Mummy?

Beware, we have found out all gastro babies tend to be the cheekiest and very devilish :) I guess from the fight they have to put up when they are newborns.

Welcome home and to a "normal" life.

Hey august,

Congrats. I'm so happy for you. 16 days that's great. I hope all it well with you and the little man. Enjoy while he's young, they grow so quick. take care

*UPDATE*

We are all going well and Lucas is happy and healthy. He is over 3kg now which is great and his wound has healed nicely. He is growing fast and loves his baths, toys and big cuddles from daddy. Hope your little beauties are doing well too.

August x:)

That is great news. I am so happy that little Lucas is doing so well. Must be all that extra love he gets off his mummy :D

Thanks Trish and congrats on expecting another beautiful daughter!

Aww no worries hun and thank you :D

Just wondering how things are going????

hi bindy!
Things are going great! How have you been? I'm glad you popped back in to see us. Lucas is getting big; he is 3 months this weekend and is a happy smiley baby. He is a great eater and sleeper and is a very easy going baby!

How is your little girl and how old is she now? Is she still having cramps and have you met with the surgeons? I have had to treat Lucas for constipation. He also needs to go at least once a day otherwise it causes him alot of discomfort. This started happening when we switched to formula feeds though so constipation is not uncommon, but of course I'm a bit sensitive about anything to do with his bowels!

His scar is completely healed and looks good. He ended up with a bit of a belly button, you can see the hood, and the scar runs horizontal, about two inches, to his right. Its amazing to see him now when looking back at the photos of his time in NICU, he has done so well and we are so proud of him. I can send a pic of his belly if anyone is interested in checking it out!

Could I ask you Bindy more specifically about how she went when she started solids? How was it on her bowels? I’m also a bit nervous as to when the right time would be to start. I’d love to try him with something after xmas but I’m not too sure. Lucas was born 36+2wks so very similar to your little girl and her corrected age as a baby.

So everything is going well for us, and Boychuck, if you get this update I’d love to hear how Brianna is going and happy birthday to your other little princess too BTW!

MODS ~ Could we maybe move this to the NICU/premmie thread?:thumbsup:

Just popping in and reading your update. Good to hear that Lucas is doing so well.

Now, I don't know anything about gastrochisis however, I would be hesitant to start Lucas or my own babies on solids until they are 6 months old. Their digestive system just isn't ready for it. Of course you may have other reasons for starting him sooner, not sure if it does have something to do with his condition or not.

Anyway, I am so happy to see that he is dong so well. What a gorgeous little man he is :D

Hi August!

Glad to hear things are going really really well! My daughter was also a great sleeper/eater. I think being put into a fairly strict routine at the hospital, and the noises etc really helped. However beware when they start walking...She changed over night *LOL* She became the cheekiest little miss independence :lol:

She's now 3 and a half.

Unfortunately, we had another visit to the hospital last month. She once again got severe stomach cramps. I do really put it down to the biscuits she ate on the previous weekend...FOr some reason she can't tolerate biscuits with cream in the middle. I didn't even think when her Nanna gave her some (she hadn't had any since the last bout of severe cramping in January). All week, she had sore bellies on and off and it got really bad on thefollowing weekend. She had been doing BMs during htat week, but I didn't really see them (she goes to the toilet on her own, so its hard to checK!!)

Poor thing had all different tests/xrays/blood tests/urine tests...They even emailed all the stuff to the Royal Brisbane...It looks like, it just clogs her up...So I need to remember next time, if she starts having small belly pains, to give her some Parachoc (its kinda like a lubricant) to get things moving so they don't block up. I ended up having to give her a laxative this time,which did the job well within a day. Shes been fine since. Not sure what is in the biccies, but she is banned!!! (She does fine on other biccies, bread etc)

Anyways, on the solids. I started mine at 4 months on rice cereal as she started waking up during the night. I know its a wives tale, but it helped straight away and she was straight back to sleep during the night again. It worked really good with her (beware though..with my next daughter it caused MAJOR constipation issues..and ended up havign to put her on wheat cereal) I totally understand the fear!! My surgeon really just told me to treat her like a normal baby.....

I also made my own foods, as I knew what was in them :)

Pumpkin was my next intro...a couple of weeks later... I was pretty anal about introing foods, so I took like over a week of the one food to make sure she wasn't having a reaction!!! *LOL* I wouldn't give her stuff that was mixed together until she was over 9 months old. (Unless they were a mixture of ones I have given to her previously...eg. pumpkin, broccoli, mince mixed together)

We never had any problems with her food until January this year...when those stomach cramps started.

The surgeon wasn't too concerned with her two bad stomach cramps. He really doesn't see that gastro has any other effects...however I disagree, as I visit a gastro forum and there are some children on there who have had sideeffects from gastro..ANd of course us mothers are going to be much more concerned about belly problems. HOpefully you won't have to , but you make a big deal about your child having gastro if you have to visit a hospital..ok?

Well I better go. I'm so very glad things are going well with you! Let me know if I can help with anything and keep us updated!!
Take care
Bel

Hi Bel
Oh no those naughty cream bickies! So glad to hear everything has been well up until then. When we do start solids I think I will be like yourself and start slow, waiting for any reactions, not just to the food but to see the effect on his bowels. I had to try a whole heap of things for Lucas' constipation, it is the only thing that has been a concern for us since bringing him home.

He is on Duphalac now which is a non-stimulant laxitive. It is a sugar that is not absorbed and goes in one end and out the other drawing moisture to the bowel to help him go. DP and I spent hours one morning searching for answers about how to treat infant constipation and what we found was that in treating constipation you need to be consistant with the treatment, not stop once he goes, like we were doing, to have to start all over again.

Anyway, thanks for your advice re: ever presenting to the hospital and it so good to hear all is going really well for you. I finally got onto gastroschsis.uk and I also joined yahoos gastro site. I was having problems getting onto geeps but I must try to remember to share our story as much as possible as when I was pregnant all I wanted was to hear was positive outcomes for these precious babes.

Trish ~ wow 34 weeks!:bellygrowing: How the time flys! Thanks so much for all your support and advice as always! :hug:

August x

I am new to belly belly but have been reading through your posts and see that there are quite a few babies which have been born with gastroschisis. I am currently 14 weeks with my first baby. Having had my first scan last week and was very upsetting to find my baby has gastroschisis. Having never heard much about this condition it was quite upsetting! I did speak with a specialist over the phone from the hospital immediately after having the scan done who explained what this meant. I have now done a bit of research and it seems these days hospitals are well equipped to take care of babies during and after the birth so everything goes well. I believe the statistics are 1 in about 4000 births so these babies are special right from the start :) I will be going to the Brisbane Mater Womens Hospital (however live on Gold Coast), due 14 May however it seems that most babies are born a little earlier than the due date. I have not had my first appt yet with the hospital which is why I am probably a bit anxious! I would love a natural birth, and it seems in some cases this is fine, but I would think with the bowel on the outside it would get damaged on the way out. Would love any info or comments from others who have been through a natural and c section if possible. Take care :)