Comments for Gastroschisis

Comment on my poor lil girl by vicky

vicky — Thu, 15 May 2008 18:43:09 +0000

Hi Gemma. My daughter was born with gastroschisis and she was in hospital for a year, then in and out for a few months after that…. She went through much of what your daughter is going through, not feeding, not gaining weight, and alos several operations and the list goes on and on. She is now 5, and although she will be on medication for life she is doing well. She thinks her scars are a result of a big adventure she went on and is proud to show people..I know that is for the moment..
I found it very hard while she was in hospital, i felt as though she was not my child. She was my 5th baby (ive 6 now, but thats another story) so i found it hard not to be able to do things with her i had done with the other kids..
The hospital where very good though, i had an hour trip to visit her everyday, and me and the other kids got into a nice little routine. Taking the older kids to school then myself and the two boys driving up to the hospital..
We would spend the morning there and then have to travel back in order to do the normal household jobs. Then of a weekend we were back up to the hospital all of us.. I have no family living near so was very alone..

It would kill me when Hannah would smile at the nurses and never at me, I felt she was always asleep when I was there and when she was not I could only hold her for awhile. This was because of a number of reasons but mostly because she was covered in tubes and I had two small boys around my feet, wanting attention…
But what also hurt was trying to juggle Christmas day, the nurses where very nice to us all and even gave my other children a present when we was visiting Hannah, but walking away on Christmas day and leaving her in the hospital was a killer.

Well like I said it was a very hard time for us all, if I’m really honest it took me a very long time to bond with her once she was out of hospital.. Again and to this day, she prefers the company of men, I put this down to the fact that she never seen a lot of men in the first year. Her dad because of work could only visit one day at the weekend and the two of them are now the best of friends…

My advice to you and to anyone else who’s child is in hospital for a long time is try and get as much contact with them as you can.
Remember it is your child and you are in control, which is something I could never manage.
Also talk to someone, I was never offered this and really I should have been, a year is a long time not to be able to bond with your child..

God I don’t half go on….I will end now and hope I have been of some help and I totally understand how you must be feeling and if you would like to talk anymore my email is vicky245@msn.com

Comment on My son was born with Gastroschisis by August

August — Wed, 14 May 2008 19:54:39 +0000

My son is 10 months old and was born with gastroschisis. He was constipated when he was 6 weeks old which lasted for about a month, it started happening when he was put on formula. Could there be anything he is eating that is making him constipated? I tried prune juice and all sorts of things but the only thing that worked was Duphalac which you buy at the chemist. It is a non-stimulating laxitive and was really effective. Our paediatrician recommended it. Hopefully it is just something he has been eating more so than anything to do with his gastroschisis. A check up at the doctors would be worthwhile though. Another gastroschisis mum I know said that her daughter could not eat sweet biscuts, they would make her sick, but she was fine as long as she didnt have any. All the best, hope it clears up soon as I know how terrible it is to see them go through it.

August

Comment on Empty arms by tynkrrbell

tynkrrbell — Tue, 13 May 2008 04:19:47 +0000

Devon,

I just found this website and was thrilled - I have a 16 year old son who was born with gastro. That said, after browsing it a bit, I was really disappointed - people are sharing their stories, but no one is responding to anyone else. What a sad thing - this is a place where we can come together and give support over something that is relatively rare, and yet no one is doing so.

I read your story and it made me cry. First, I was pregnant at 16, and miscarried at about five months. I won’t go into details, but the feelings you describe were very similar to what I felt. Second, I got pregnant again at 18 (guess I didn’t learn me lesson! ) and at about 4 weeks found out my baby had gastro. I was young, but decided to be responsible. Even though the doctors were saying I should abort, I studied up on gastro and did everything I could to prepare. So I guess I feel like I can relate a bit to what you went through. And I want you to know how very, very sorry I am for your loss. Losing a baby is never easy, and losing a baby under difficult circumstances is even harder. You were very brave and should be very proud of yourself - not many young women would have been as mature and responsible as you were.

I really want to encourage you to talk to people about your loss, your feelings, etc. Maybe find a friend or family member who is supportive, or even a counselor or doctor. Just talk, talk, talk… it really does help.

Again, I’m so sorry for what you went through - sometimes life just doesn’t seem fair.

Hugs,

-kari from seattle, wa, usa-

Comment on my poor lil girl by bethany dawson

bethany dawson — Thu, 08 May 2008 11:23:54 +0000

hello gemma my names nikki our daughter bethany is 11 months old and has been out of hospital now eight weeks over the last 4 months and in solidly for the previoue 8 months bethany had a silo and has tpn at home she has 5ml an hr for 16hrs a day she has home pn for 12hrs a day she has a nite in hospital every week so she can have blood transfusions as she has liver disease and portal hypertension which means she bleeds daily 2/3/4/5 times a day i know its very very hard so if you need to talk it always helped me to talk to others with same problems and that goes out to all members my email is nikyummymummy@aol.com on this website are pictures of bethany xxxxxx

Comment on Register by vp021075@hotmail.com

vp021075@hotmail.com — Tue, 06 May 2008 13:42:24 +0000

My son was born with Gastroschisis and has had an amazing recovery, having left Addenbrookes after only 13 days and no real problems other than very slow weight gain in the initial 6 months.

He is now on the 75th centile and 14 months old.

However he has lately started suffering with really bad constipation. This morning he almost screamed the house down trying to pass a stool. he has a reasonably balanced diet, and I try to give him prunes every few days, but he is still in pain at least once a week.

Has anyone else had this problem?

Comment on Baby # 2 on the way by bradysmommy

bradysmommy — Sat, 03 May 2008 06:29:09 +0000

the same problem happened to me except i was referred to a specialist and they were so busy they did one ultra sound a month and wouldn’t take me thru their clinic i never had any blood work done and never even had my blood pressure checked. I went two months with no news so i went and found another dr. who would transfer me to another specialist. Check for high risk dr.’s and pediatric surgons in your area if i’m to late with this advice hopefully it can help somebody else. My son was bad off when he was born and the new hospital i went to told me that maybe if the one i was going to before had paid close enough attention (because the last month and half they started canceling my ultrasounds) then they would have known he had started going into distress and that his bowels and becomer servrely dilated and they would have known an emergency c-section was in order and it might not have gotten so out of hand. 5 surgeries later they call him the miracle baby because they said he would have a ostomy for the rest of his life and he doesn’t they said his bowels would never work and they do and after 5 surgeries and 5 and 1/2 months of nicu and picu life we should be home within the next week and half two weeks tops. SO TAKE CONTROL TRUST ME IT’S FOR THE BEST

Comment on Tanisha`s Story by slade2sleney

slade2sleney — Fri, 02 May 2008 09:56:56 +0000

thank you for youe message. i just read Tanisha’s story. it sounds so similar to mine!!! my girls are the same…running around, taking over the world!! i will be bringing steph to the library to see this website in the school holidays at the end of may. i unfortunately do not have the internet at home which is why i havent added any photos of steph yet!!! i am on facebook, sherry sleney…which has some photos. have a fab weekend.

Comment on Does gastroschisis affect your fertility by August

August — Fri, 02 May 2008 04:55:41 +0000

Hi Ashleigh,

With gastroschisis, the organs that herniate (out from the body) varies from baby to baby. My son for example who is 9 months old had his small intestine and large intestine “on the outside”.

Sometimes though other organs can herniate, and in baby girls this can include the ovaries and maybe this is what happened in your case.

In regards to fertitliy I’d say that every care would have been taken, as with your other organs that your ovaries were protected.

To find out you would need to visit a doctor and explain your past gastroschsis, and have him/her assist you in finding out more about your fertility. They might get you to chart your menstrual cycle or test via other methods to see whether you ovulate (whether your ovary releases an egg).

Only one of your two ovaries will release an egg in any given month, so it is still very possible to have children with only one ovary also.

Good on for you asking this question and I hope you find this of help in some way.

August

Comment on Gastroschisis baby now 3 months old! by August

August — Fri, 02 May 2008 04:28:10 +0000

Hi everyone, this is my story, thanks for posting it Dean. My son is now 9 months old and is still doing great. No complaints whatsoever. He is getting to be a big and cheeky boy, who keeps me very busy getting his little hands into everything and anything. He is sitting up well but no crawling as yet. He can also say mum, dad and nan. We are from Australia, and his surgery was done at John Hunter Hospital, Newcastle, NSW. All the birthing staff and NICU team were amazing, you can tell those people really love babies for the love and care they give to your child, especially in the wee hours of the morning. My little man hated the bright lights in NICU and he used to wear these little felt sunnies! They had tape them to his head or he would not sleep! They also have little ear muffs for them as well.

Look forward to getting to know the other parents and parents-to-be, and adding more of our story along the way.

Comment on my daughter had gastroschisis by Dean

Dean — Thu, 01 May 2008 11:12:28 +0000

Thanks Sherry, although you may see a lot of the articles added to this website as posted by me, the actual site itself was set up over a year ago, it was only recently that i redesigned the website and had to basically copy and paste the original stories into this new websites system.

When i first started the website i added my daughter Tanishas birth story, which you can read here

I am sorry if i caused any confusion, my daughter is now a six year old tearaway threatening world domination