We found out about a month ago that our baby has Gastrochisis an after struggeling with this for a period we decided to activly gather as much info as possible but I have a few questions that would love some 1 who has gone through it all themselves to comment on:
First of all my consultant has adv that i will have a natural birth but from what iv read i have yet to c any 1 that has done this or even advises this?
Secondly i no all individual babies have different paths to recovery but do u only find out how bad it is once the baby is born or are u able to tell at a 20 week scan?
Thirdly has any1 already had a young child an how did this affect the bonding process between them as i hav a 2 yr old already an this is just 1 of the major worries please adv if u hav any tips on how to bring them together an not create resentment.
Lastly has any 1 experinced Necrotising Enteriocolitis also called NEC as most of the stories on here are really posotive but some peoplw have said this is quite common.
Thank you for your time an any comments would be much appreciated xxx
About Frances
Hi me and my partner found out about a month ago at our 12 week scan that our baby has Gastrochisis. Obv this tore me apart an at first i couldnt think of anything else apart from the suffering. After doing alot of research and reading alot of other peoples storys we can now see the light at the end of the tunnel although we no we all hav a long journey ahead.
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HI AM A MOTHER OF A NOW 5 MONTH OLD BABY THAT WAS BORN WITH GASTROSCHISIS. MY DELIVERY WAS VAGINAL I HAD MY BABY 5 WEEKS EARLY ( HE WEIGHT 6LBS 2 OZ) HE WAS IN THE HOSPITAL FOR 6 WEEKS BEFORE I COULD TAKE HIM HOME. BEFORE HE WAS BORN I WAS GETTING ULTRASOUNDS OUNCE A MONTH THEN EVERY 2 WEEKS, THEY ALWAYS TOLD ME THAT THEY COULDNT TELL ME HOW BAD IT WAS TILL HE WAS BORN. BUT IN MY LAST ULTRASOUND THEY WERE ABLE TO TELL ME THAT HIS INTESTINES HAD DILETED SO THAT MADE REALLY SAD. WHEN HE WAS BORN HE WENT TO SURGERY AND THEN A WEEK LATER THEY CLOSED IT UP. THE SURGENT WASNT ABLE TO PUT ALL HIS INTESTINES IN THE FIRST SURGERY. 10 DAYS AFTER HIS SECOND SURGERY THEY STARTED SMALL FEEDS BUT A WEEK AFTER THEY STARTED HIS FEEDS THEY HAD TO STOP DUE TO A HORRIBLE INFECTION THEY BELIVED IT WAS NEC BUT IT WAS CONTROLLED WITH ANTIBOTICS HIS INFECTION WAS SO BAD THOUGH THAT IT DID GO TO HIS BLOOD STREAM AND URINE. HE WAS WITH ANTIBOTICS FOR 14 DAYS HE ALSO HAD TO GET A BLOOD TRANSFUSION. AFTER THE INFECTION WAS UNDER CONTROL THE TPN STARTED TO AFFECT HIS LIVER SO OUNCE HE STARTED ON HIS FEEDS THEY STARTED TO GIVE HIM MEDICATION FOR THAT. HIS LIVER IS FINE NOW. BUT JUST 2 WKS AGO HE WAS ADMITTED IN THE HOSPITAL FOR A INTESTINAL INFECTION AGAIN. THEY THOUGHT IT COULD OF BEEN A BLOCKAGE DUE TO SCAR TISSUE BUT AGAIN HE WAS PUT IN ANTIBOTICS AND HE WAS FINE WITH NO NEED OF ADITIONAL SURGERY. AM NOT GOING TO LIE ITS REALLY HARD SEEING ALL THE THINGS YOUR BABY HAS TO GO THROUGH BUT BEING IN THE NICU FOR 6 WEEKS ALSO LETS U SEE THAT THEY ARE BABIES THERE WITH WORST HEALTH CONDITION THAT THE PARENTS DONT KNOW HOW MANY MORE MONTHS HAVE TO PASS BEFORE THEY CAN TAKE THEIR BABY HOME OR EVEN IF THEY ARE GOING TO BE ABLE TO DO THAT AT ALL. AS BONDING IS CONCERNED, WELL I GOT TO HOLD MY SON FOR THE FIRST TIME 10 DAYS AFTER BIRTH AND I STARTED BREASTFEEDING ALMOST AFTER ONE MONTH OF BIRTH SO THAT REALLY HELPED US PLUS I WAS THERE WITH HIM ALMOST ALL DAY . I HOPE THIS INFO IS OF ANY HELP TO U.
Hi, my name is Kori, I am 19 years old and was born with Gastroschisis. My mother was only 23 when she had me and even though she had ultrasounds performed, the doctors still did not pick up on my condition. When I was born, I was 3 weeks early and it was a huge surprise when I can out with my entire abdomen exposed. My mother was unable to see me, and the doctors whisked me off into the emergency room for emergency abdominal surgery. I had 5 surgeries from age newborn to age 2. I can tell you, that I have grown up normally and have had no major issues regarding the condition. The only “problem” i have had was in 5th grade when I was going through my growth spurts. I was stuck in the fetal position for over a week in a half with abdominal pain. My mother, who is a NICU nurse and has been for 16 years now, consulted a surgeon and he told her that he did not want to operate unless I completely obstructed. I was later told that my stretching pains were most likely due to my rapid growth. Other than that instance, I have had no issues with the condition. I know have a scar that stretched the entire length of my abdomen. When I tell my friends about it, they find it pretty cool that I do not have a belly button.. and I am kind of proud of it myself. It makes me different and unique. Gastroschisis has not held me back in any way. The only issues that I will be dealing with in the future is child bearing and possible surgery, but I am not worried about that right now haha. I wish you and your newborn the best and I know everything will be just fine =] GOOD LUCK!
hi Frances, Ive copied your questions and added my comments:First of all my consultant has adv that i will have a natural birth but from what iv read i have yet to c any 1 that has done this or even advises this?All the research I did said vaginal birth was the preferred mode of delivery UNLESS it was contraindicated for some reason. The bowel is not at risk during vaginal delivery – I was worried about that but was assured it was fine. Vaginal delivery is always better for the baby’s respiratory development. PErsonally I had Csection as there were complications and I had to deliver by week 38 and it didn’t happen naturally.Secondly i no all individual babies have different paths to recovery but do u only find out how bad it is once the baby is born or are u able to tell at a 20 week scan? We had regular scans to monitor the bowel, some people find out that the bowel is damaged in utero. But really it is only after delivery and examination of the bowel that you know what you might be dealing with, and then every baby responds differently to treatments.Thirdly has any1 already had a young child an how did this affect the bonding process between them as i hav a 2 yr old already an this is just 1 of the major worries please adv if u hav any tips on how to bring them together an not create resentment.I can’t advise on that as our son is our first child.Lastly has any 1 experinced Necrotising Enteriocolitis also called NEC as most of the stories on here are really posotive but some peoplw have said this is quite common.Yes, our son got NEC. this was the most difficult part for us I think. Breastmilk is the natural food for a baby, and is even more important for a Gastroschisis baby or a baby who is at risk of NEC. Gastroschisis carries a risk of about 20% of getting NEC, but NEC is also associated with formula feeding, so the immunoglobulins present in breastmilk are vitally important for a baby with Gastroschisis – I’m sure your hospital will inform you of this though. let me know if you have more questions. xx baggageThank you for your time an any comments would be much appreciated xxx
Hi my baby girl was born with gastro. in the beginning I thought that it was something that i had done …but it wasnt …your fears never go away…I do not recommend having a naturall birth due to the fact that no one really knows the effects that the birth canal and the birthing process can pose on the internal organs of such a small child. My daughter came 1month early after i had been on bed rest for 5 months. To top it of she also had microcephaly and IUGR. I myself had a c-section due to previous ones. My daughter Shiloh was born @ only 3lbs 4oz and the first few weeks are rough but it does get better. Myself and my daughter had to be an hour away from our family but my children understood. Involve your child let him/her know and see what is going on in the nice and as hard as it is be positive. Shiloh was only in the nicu for 2months and the bonding is not an issues ….yes your child will miss you but the important thing to remember is that you r mommy and mommy is the best thing you can be. With as resilient as children are they will miss u but u will be home and soon you will be home together. Also if you have any more questions i would be happy to answer them for u.
Hi France’s, my name is serina and I am 18 weeks pregnant and also found out at my 12 week scan that my baby has gastroschisis, I already have a 7 year old healthy lil girl and have all the same concerns, worries and fears as you. I have been blameing myself for a while but reading your post has made me feel like im not the only person going through this and it’s not any thing I have done wrong unfortunately it’s just one of those things,if u have felt like this in anyway I hope it helps u a bitto know that your not alone either! I recently got told that god gives special babies to special families and really believe this to be true! I hope all goes well for u from what I have read am sure both our babies will be fine, try to keep positive, I am! X
my daughter was born with gastroschisis in 1996 and it all was out, she was born 4 weeks early but all was ok,her mom had a c-section and she was took straight off to have a 4 hour operation they got it all back in and only had to have that one op, she was in birmingham childrens hospital for nearly 2 months and it is hard as her mom didnt think she could bond as couldnt hold her but we was allowed to hold her hand in the incubator and soon got chance to hold her. my suggestion is dont feel guilty as it is happeneing more these days and its nothing you have done wrong, doctors said she also had spina bifida and suggested we aborted, we refused and they got it wrong and this was the top doctors but all in all they was brilliant and all staff was brilliant, she is now 15 done really well at school, had no bullying or nothing like that over it and we always told her she had a special belly button, she just had a 2nd op to make her a new belly button as she was consious about the one she had as the skin went straight over where the hole should be but looked ok it was just because she wanted to wear bikinis in the summer. as soon as born they wrapped like a cling film around it all and it doesnt look scary and she didnt look in pain or nothing, in fact the cheeky little bugger seemed to look at me and bobbed her tongue out just as she was being took away!as i say it has caused no problems in her life, she has eaten ok gone to toilet ok and her periods started all ok, it is a worrying time but keep thinking positive, she had a tube up her nose for feeding and it can look scary but she never ever seemed in any discomfort at all. take plenty photos as they may question you a lot when older, also with having a sister/brother get them involved and when your child is growing up there is no need for them to be wrapped up in cotton wool so to speak, still let them run about and fall and do normal kiddy things, hope all goes well x
my daughter was born with gastroschisis in 1996 and it all was out, she was born 4 weeks early but all was ok,her mom had a c-section and she was took straight off to have a 4 hour operation they got it all back in and only had to have that one op, she was in birmingham childrens hospital for nearly 2 months and it is hard as her mom didnt think she could bond as couldnt hold her but we was allowed to hold her hand in the incubator and soon got chance to hold her. my suggestion is dont feel guilty as it is happeneing more these days and its nothing you have done wrong, doctors said she also had spina bifida and suggested we aborted, we refused and they got it wrong and this was the top doctors but all in all they was brilliant and all staff was brilliant, she is now 15 done really well at school, had no bullying or nothing like that over it and we always told her she had a special belly button, she just had a 2nd op to make her a new belly button as she was consious about the one she had as the skin went straight over where the hole should be but looked ok it was just because she wanted to wear bikinis in the summer. as soon as born they wrapped like a cling film around it all and it doesnt look scary and she didnt look in pain or nothing, in fact the cheeky little bugger seemed to look at me and bobbed her tongue out just as she was being took away!as i say it has caused no problems in her life, she has eaten ok gone to toilet ok and her periods started all ok, it is a worrying time but keep thinking positive, she had a tube up her nose for feeding and it can look scary but she never ever seemed in any discomfort at all. take plenty photos as they may question you a lot when older, also with having a sister/brother get them involved and when your child is growing up there is no need for them to be wrapped up in cotton wool so to speak, still let them run about and fall and do normal kiddy things, hope all goes well x
Hi,
My name is Panga. My child was diagnosed with this at my first
ultrasound…at about 12 weeks. I was scared to death. I had an
elective C-section at 37 weeks, which is full term. When my husband and I
sat down with my doctor and discussed the option of a natural birth vs
C-section the choice was clear to us. We were told that carrying a baby
with this defect to the full 40 weeks would be risky for our child. We
just had to wait for her lungs to fully develop (37 weeks).
When I had her we found out that a part of her intestines, the part that
connected the small one to the big one, had died. I was even more
thankful that I had my C-section because it was something that the
ultrasounds did not show. Whose knows how much longer she could have
survived inside me like that. She ended up with a ileostomy (stoma) and
had to wear a pouch for the first 5 months of her life. On July 28th she
had her ileostomy take-down, successfully, but due to complications
(mainly distention of her abdomen due to her not being able to full pass
food through) she was hospitalized twice. She is happy and healthy now.
She is 7 months and weighs 12 pounds. I know it is small compare to
“normal” babies, but she has met every milestone on time or even earlier
then “normal” babies and she is alert and active. Keep your head up
and keep your faith alive. It’ll all work out.
Hi I had my baby 22 years ago and he is still healthy and wonderful yes it is scary when you find out but i had a great team of doctors from Kings college hospital in London I had him 4 weeks early by c section which i think is the best way to go. I had monthly scans I was lucky my boy didnt have any twists He was 2 hours old when he had his op
i dont always come on this site anymore but i wanted to give comfort to anyone who is expecting a baby with gastroschsis. our little boy was born 2 years ago with this condition and i remember how scared i was and upset and it really did ruin my pregnancy the unknown i felt like i couldnt get excited about the baby as didnt know what was going to happen.
our baby was born by c section at 36 weeks and only weight 4lb and from what doctors told us he had very large defect for such a small baby he was in NICU for 4 weeks and they were tough 4 weeks but they used the silo bag method and everything went well there was ups and downs and set backs and you really do need to take each day as it comes but he got out before his due date and is a gorgeous healthy happy 2 year old.
if anyone is worried and wants me to answer any questions please email me at gemmahynes14@hotmail.co.uk – try to be positive the outcome is good for gastroschisis
Frances, Doctors will advise you to have a natural birth as they did me wife. i think this is to save money and resources. A close friend of mine who is a surgeon strongly advsied us to have c-section to be on the safe side and I would advise that any parents who are expecting a bady with gastroschisis. My Johnathan was out of hospital after 8 weeks and had to go back a week later as he caught an infection through the central line he still had attached to his chest. From what I have read and heard this is not uncommon in Gastroschisis babies. It all depends on how quickly your little one takes to the milk etc. I know from experience that this can be frustrating, especially when you see so many babies come to the neo natal unit and leave before you but it is all for the best for your baby. With regards to bonding, you will have no problem at all!! your baby will bond with you and it will all soon be a distant memory. Just try and be patient. There may be times when you feel there is very slow progress (I know!!!) but you will be suprised how quickly your baby comes along. Johnathan is no 7 months old and a cheeky little monkey:-)