![]() "Gastroschisis is an easy fix” “If you had to pick a birth defect, gastroschisis would be the one.” “Once we close the baby up and you go home, you have nothing else to worry about.” These were the responses from practitioners seven years ago when at 12 weeks we found out our son, Avery would be born with gastroschisis. Now, seven years later, our foundation gets 1-2 families a week getting this same input from their physician. And it does not end up being true. Gastroschisis is one of the more visceral birth defects in the world. The defect is a hole in the abdominal wall that can range in size that causes the intestines, and sometimes other organs to protrude out of the body. The medical community does not know what causes the abdominal wall to not close down completely around the umbilical cord as it should in normal development. The survival rate is 80-90%, with about 40% experiencing long-term complications across a spectrum. The trends are on the upswing too- state side 1990 it was 1 in 10,000. Then in 2011 it was 1 in 2229. Earlier this year the CDC reported that in 14 states, there was a 30% increase in the disease across all demographics. However, gastroschisis is a rare disease. A rare disease is defined as a disease that affects less than 200,000 people at one time. The CDC reports that 1,871 babies are affected by gastroschisis a year. Which frustrates research- trends are up, but the sample sizes to study are very small. This might sound like a lot of numbers to you, but they really mean everything to our population. When you are one of 7,000 rare diseases it means that the knowledge (much less correct pronunciation) on gastroschisis is not going to be pervasive. Initially, it means our expecting parents will have to travel cities away, some even states away for their child’s initial treatment at birth. That stay could be 3 weeks (on average about 6-8) or 740+ days. Being a rare disease also means our parents cannot walk into their local Urgent Care with a child who has a compacted bowel, fever or vomiting, and find a practitioner that has had experience treating a gastroschisis affected gut (and believe me, that does matter.) For any other child, vomiting and fever would normally mean a bug, for our children it could mean intussusception, volvulus, or obstruction. Things most doctors rarely see. Simply put, gastroschisis means there are no road maps. To test this "easy fix" idea, Avery’s Angels recently asked some of it’s 12,000 social media followers to submit a simple sample: 1) Baby’s Name 2) Date of birth 3) Date until first hold 3) Days in the NICU 4) Number of Surgeries 5) Any long term complications. We have had over 200 responses and no 2 are alike. Some families went 2-3 weeks before first holding their child, while others were in the unit and discharged in that time. Some babies had little complications after discharge, some have spent upwards of 15 years in and out of the hospital. Out of the 200 submissions, no 2 were the same. And, as one parent put it, none of the experiences were “easy.” With this in mind, that I could not speak about one experience for all, I asked our families to weigh into this piece. What would you want the world to know? What would you want an expecting family to know? The overwhelming consensus was this: Expect anything. Outcomes cannot be promised. This defect is not an "easy fix" no matter what you get handed. You never get to “leave it behind,” you’ll watch every poop, fever and vomit with caution, and with good reason. Don’t consult Dr. Facebook, know where your knowledgeable physician is, find that person and build that relationship. Ask questions. If you have to, ask the same question over and over. You’ll be terrified at some points, and that is OK. You find out that you have a strength in you that you never knew you were capable of, and sometimes your child will lead you through that as they endure their trial. When you need to, seek support from the gastroschisis community. Even though every journey is different, there is commonality in the journey still, and it helps to know you’re not alone. The “easy” part of gastroschisis is the love that comes, unconditionally, for a tiny baby born inside out, that teaches you how to love from the inside out. There is an amazing and fiercely loyal tribe of gastroschisis families and survivors that have come together over the years, to support one another, to help others get to the right people who can help. These are the parts where good starts to shine through. When you cannot have a road map as to where you are going, it helps to have a tribe to walk with you along the way. We have a lot to accomplish, and an uphill climb. Gastroschisis is a rare disease, meaning the science behind understanding the disease is going to take a lot of time and effort. It means that the skill set to treat this is going to be rare too. I am not worried about it though, because the families I get to serve, the patients I get to work with- survivors and angels, are relentless. The push to make up the gaps in understanding comes with a tenacity that cannot be paralleled. Some of our moms and dads even start up a new career in medicine as nurses, CNA’s, doctors and paramedics. Even more of them take up the charge to promote awareness and research. Nearly all of them turn around to give a helping hand to others struggling through. No, no one would chose this defect. But anyone would chose this tribe. Written by: Meghan Hall CEO/Founder Avery's Angels ® Gastroschisis Foundation www.averysangels.org
Nikki Billings
9/8/2016 05:44:40 pm
I love reading anything and everything you post!! It always hits Home and gives me such a sense of hope. 💚💚
Ginny O'Rourke
9/9/2016 12:18:53 am
When we found out our little man had gastroschisis at 12 weeks we spoke to a surgeon who said it's 95% success rate that it looks a big deal but it's easy to fix. We had our first and last hold at 10 days. I still have lots of questions.💙💔 9/9/2016 03:47:22 am
Hi there! I am the president of Avery's a Angels Gastroschisis Foundation. I also personally oversee our Loss/Bereavement support, as I too lost a son to Gastroschisis. We would love to support you and help answer any questions. My email is [email protected] and we even have a private group for our loss families as well. 💚
Linda James
9/9/2016 06:28:44 pm
I am the grandmother of sweet Lydia Faith, and I am truly thankful
Stephanie Dauphin
9/13/2016 09:11:57 pm
Hello! I'm 30 years old and a gastroschisis survivor. After my birth, I had to stay in SickKids Hospital in Toronto Ontario for about 7 months before my mom could take me home. I had a bowel resection of half of my small intestine. I had the odd cramp and constipation here and there. I have malrotated bowels. I didn't have much to worry about until I had my baby girl just over 6 months ago. My placenta abrupted, so I went in for an emergency c-section. Little did the OBGYN know that my abdomen was a mess. They had to cut into my bowel and bladder to take my daughter out. Intensive care and many blood transfusions later, I went home with the most amazing gift that I thank God every day for. Now, I'm at risk of having a bowel obstruction which I fear for everyday. The doc said there's nothing I can do to prevent one so I should just live my life and enjoy my daughter. I can't. I worry so much about it. Hoping to see a counsellor soon (and I'm an RN working in mental health, go figure). So being an adult, the one complication I could face is a bowel obstruction. I'm told to not worry about it unless it happens but it's easier said than done. I'm going to try my best. Take care and I wish you all the best!
Marieke
4/18/2021 09:13:34 pm
As an adult born with gastroschisis ( now 43 years), My placenta wouldn’t come loose with my daughter was Born. An infection and 8 years later, adhesions were severe, I had to have a full bowel operation to cut the adhesions. Difficult to say if the adhesions had something to do with the infection 8 years before. Little Information is available for adults. In Holland, we’re there is a lot of experience. I think it’s important to write down experiences even as an adult. So here some experience from Holland. 9/16/2016 04:41:23 am
Gastroschisis is a terrible and rare disease. Unfortunately, is going to take a lot of time till doctors will find a treatment. I hope it will be as soon as possible... 10/7/2016 05:17:35 pm
Our 'young warrior' Owen is going on week 12 of his NICU stay due to gastroschisis and I can surely tell you this hits the spot. There is no predicting what the following day will hold. My baby boy has been through SO much. And it is my duty as a mother to be strong for him. There are days that I'm completely over the hospital and I want to pack my things up and make the 3 1/2 hour hike back home, but my baby wouldn't be here if it wasn't for these nurses and surgeons. I can't wait express enough to mothers expecting one of these miracle babies, don't get your hopes up. This journey seems very long but there WILL be an end. We've been so close to going home not once, but two times now but we still find ourselves here. I would not trade these last 12 weeks, or my baby boy for the world. Every battle we encounter is worth it.
Sophie
1/15/2018 02:26:47 pm
Hi,iam sophia..im from fiji..my son was born with gastroschisis...the surgeon had been replace it inside.my son is just 2 weeks now.
Mack
11/1/2018 04:46:55 pm
My son Jake was born with gastroschisis in 1999. He was my 2nd child, and I was 32 years old. He had two surgeries, and spent 32 days in the Hospital . He also got a blood infection after his first surgery . None of antibiotic were working, and we were feeling hopeless, There happen to be a doctor in America from Europe treating another patient. The doctor had an experimental antibiotic which saved his life. Jake has never had any complications, besides some constipation, and at times he said his scar hurt. He has always been very active, and played sports. I specifically think gymnastics helped with his scar tissue Jake is now 6'5 and very healthy. I do hope my sons story can help give someone encouragement. Please trust your doctors, but also trust your own intuition.
Brittney
11/3/2018 08:26:51 pm
It’s so nice to see that there is actually people out here like myself. I am 27 years old and have never met anyone who knew anything about this. After reading through some of the comments I realized just how lucky I am to not as many issues throughout my life and to just be alive. I have a huge scar on my stomach and for as long as I could remember I used to be embarrassed about it. Now I could care less and I still wear my bikini to the beach. I know I was in NICU for about 45 days until my parents could hold me or take me home. I don’t remember ever having any issues growing up until I was about 15 through now. I had my first Stomach Ulcer at 15. Since then I have had many other GI problems like GERD and Gastritis which also effects my dental. I get easily constipated as well. But mostly I live a pretty easy and normal life. Nothing too detrimental. At one point I was told that I would never be able to get pregnant and if I did I would be high risk. Well I did get pregnant and everything was just fine luckily. And I have never let this scar on my stomach tell me what to do. I am just happy to know there r people out there who r just like me and that it’s okay to not know much about my defect because it doesn’t seem like anyone else knows much about it either.
Rashaarn
11/20/2018 12:54:40 pm
I'm 22 from Australia and havent known of or heard about many people with gastroschisis so this post is very helpful for me! I was in and out of hospital for mine until I was about 11 years old and havent had many complications since. I'm the same with my scar and have felt embarrassed about it a lot growing up but I am feeling alot more comfortable with it now. My partner and I are also trying for a baby, so fingers crossed!
Tasha
10/11/2020 07:08:37 pm
Hello, my child is a survivor as well she is 13 and is having bad GI issues and acid reflux out of nowhere. Did u find anything that helped u with that?
Linda Pearson
4/1/2019 08:49:16 am
Hi there, my name is Linda I'm currently 51 years old. I was born in 1967. In Minneapolis MN at Hennepin County General Hospital. Needless to say my parents didn't know that there first born child would come into the world with Gastroschisis, weighing 3.5 lbs. Since they didn't have ultrasound available back then.
Yvette Garcia
7/13/2019 09:07:52 am
My daughter was born with gastroschisis. She is. Pragnet and having alot of pain did you experience this. They dont seem to be taking this serious. I feel that they are more focused on the baby. Then my daughter and the pain. I am worried that its her intestines be blocked witch has happend. I am so glade i found ypur story may god bless you and angels be with you. You guys sure are strong to go through what you have. Thank you for sharing your story.
Angela
6/18/2019 09:49:56 pm
I am 34 years old and was born with gastroschisis (1985). I spent 38 days in NICU at birth and have a scar from my pelvis to my sternum and the scar from where they attached the silo. I have had chronic abdominal pain off and on throughout my life with no explanation and occasional hospital stays. At age 21 I had my gallbladder removed. I am currently dealing with (2) ventricle hernias which will be repaired surgically next month. I was able to get pregnant and deliver a perfect and healthy baby girl at 37 weeks via c-section. I struggle to find doctors who know what gastroschisis is so most of them act as if my abdominal pain is not real or that I am drug seeking. This has been extremely frustrating for me and my family. I’m so glad I found this page and there are other people who understand the stress and pain that can come with these long term effects.
Antonina
12/29/2019 01:42:48 am
My first ultrasound found out we were having twins. and Twin B has Gastroschisis. every ultrasound was bad news.. more intestines was coming out. then I ended up being submitted into hospital as my babies were trying to come out to early. in the ended I gave birth at 33weeks. Twin B was rushed off to another hospital to be operated on. first operation was to put intestines back in. he had the tube coming out of him to drain. He never had milk /food until he was 4months. he went back into surgery to have some intestines removed because of blockage and hernia removal that developed after the first surgery. he was discharged at 5months. but Christmas day rushed back into hospital and required another surgery this time blockage on another area of the intestine. causing him to vomit up his poop! after his third surgery in intestine he was a totally new child. happy personality. have not been back since. all together 6months in hospital. and caught up in development. more advanced then Twin A.
Mia Jones
9/10/2020 05:59:55 pm
I'm 33wks and 3 days today, and I'm looking up and reading about this gastroschisis. My baby is a girl, and I liked this article, thank you so much!
Antonina
9/10/2020 06:18:56 pm
do not worry. everything turns out great in the end. follow on insta @comtois13 or fb is Navarra13
Judith Fraser
9/24/2020 01:43:18 pm
My son was born in 1988 with Gastroschisis and corrective surgery was performed by Dr. Alfred de Lorimier, a pioneer in pediatric surgery. My son spent 6 1/2 weeks in the NICU and had no subsequent complications—that is, for the first 18 years. After that, he’s had half a dozen bouts of bowel obstruction. Where are the long-term studies? That is my question.
Tracy Karstetter
2/22/2021 01:22:57 pm
Hey my name is tracy I am 48yrs I was born in 1972 with gastroschisis there were alot of babies that were born didn't live , I was born in paw paw michigan , took by ambulance to dowagiac,kalamazoo, up to ann arbor mich , I spent two years of my life there , my parents sign papers letting the doctor s video my surgery to help safe other babies born also with this birth defect , my grandparents took me up to ann arbor michigan once a year, I was born with big scar tissue , under breast bone down to pelvic , when I was 20 yrs old I was told I wasn't able to have children because both off my tubes scared up and blocked , then I had an affected gallbladder had to have the old fashion surgery had 13 staples, while that was going on I was still sick come find out I had scar tissue which came from the inside choked my lower intestine round as a pea lost 110 lbs , now I am dealing with pain in my upper intestine hoping that has happened again regards to scare tissue ,I am going to see a internal medicine doctor next Thursday to see what he can tell me , i feel better putting my story out there that I know I am not the only one love babygirl Hello my name is Shelby I’m 20 years old and I was born with Gastroschisis. I never knew it could effect getting pregnant in the future and of that the case it would explain why I was getting so “lucky” when I was 16 and not using protection with my long term boyfriend now ex but hm that makes me wonder. I have always been in and out of the ER for being born with this because I get extremely painful abominable pain and when I stretch it hurts soo much to the point I can’t sit up straight and I will stay hunched over for a few however. However, this is considering news I should try and ask my doctor about having kids and if it would be safe for me (that’s if I want kids I’m still on the fence). Also idk how they would be able to tell weather or not I could get pregnant. I’m in school to be a RN right now and I’m in my second semester so hopefully I can eventually learn more even if there is little research in adulthood with ppl born looking like a plate of spaghetti. Lol (I use humor to cope with a lot of things including this) I would say sorry if I offend you however, I’m apart of this rare disease so let me have my rare jokes hahaha. Comments are closed.
|