Has anyone dealt with Gastroschisis?

MummaKat - posted on 06/12/2012 ( 1 mom has responded )

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I'm 15 weeks pregnant and at my 12 week scan discovered our baby has Gastroschisis. I'm trying to find out what to expect during the pregnancy and after i give birth. I've been told bub will need an op straight after birth and i'm worried that i won't bond with my child as great as i did with my 2 girls because i won't be able to hold or touch bub for sometime after birth as bub will be in a different hospital for the op and i'll have to wait to be stablized before they'll transfer me as well as bub could be in hospital for weeks! I'm scared, confused, depressed and not sleeping, if anyone has any advise or a similar story please share!

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Amber - posted on 07/26/2012

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My daughter was born with gastroschisis, diagnosed at 19 weeks via ultrasound following high AFP readings. She was born at 36 w 6 d following a 27 hour induced labor, weighing 4 lbs 14 oz and 17 inches in length.

First and foremost, you will get through this. It is a hard, scary path you are on now, but you will survive.

Second, gastroschisis is the best birth defect to have. Seriously. Our daughters surgeon told us that if he had to pick a birth defect for his child to have, it would be gastroshisis. The recovery is simple and straightforward, and usually complication free, has very small chance of recurrence and is usually not associated with other problems. I thought he was crazy, because what is worse than having your guts out of your stomach, but after learning about other defects and families enduring them, it really isn't as bad as it could be.

Third, you wanted advise. Get a great support team. My parents were with my husband and I every step of the way.My mother was present at the delivery in case I broke down watching my child leave the room. My father followed my daughter out of the room to the nursery, watched/waited as they stabilized her so I knew that someone was close. An hour after birth my daughter was ambulanced to the children's hospital, and my father followed the ambulance, to ensure she got their safely, found the NICU, and then talked the nurses to let him see her once she was stable, despite it being after hours (parents had 24 hour access, others 6 am to 11 pm). His report back to me that she was safe and sound brought me much peace and comfort since I had only seen my daughter for a few minutes. We lived 3 hours away from the hospital so my husband had to travel home during the week to work. While he was gone, my mother was with me every step of the way. She kept me busy when we took a break from the hospital and made sure I had everything I needed. (Food, laundry, etc) I also had several friends who called everyday to talk to me and find out how my little one was doing. Besides support, the best thing you can do is prepare yourself. Tour the NICU at the hospital where your baby will be, meet with the surgeons, and browse the internet with care. Pictures of other babies are alarmingly accurate, but can really put your hormones into overdrive. Every story out there for gastroschsis is different, and yours will be too. But getting some idea of what to expect helps.

After my baby was diagnosed with gastroschisis, I had an ultrasound by a specialist in the same town as the Children's Hospital, where it would critical I deliver to make transfer of my baby easier, every 4-6 weeks to monitor her condition. When I was 36 weeks and5 days, the dr said her intestines looked swollen and it was advisable to get her out rather than keep her in for a few more weeks, and was sent immediately to the hospital to be induced for delivery. I was discharged 12 hours after delivery and went straight to my daughter's bed side. My daughter had a silo placed some hours after birth, and then the hole was closed when she was 5 days old. I finally got to hold her when she was 8 days old. She started tube feedings at 13 days and hot her first bottle at 15 days, and was able to nurse (finally!) at 17 days. She came home on day 20, a week earlier than the surgeons best cast scenario estimate.

I had feared difficulty bonding since I couldn't hold her or really be alone with her. (The NICU being a large open room with incubators and beds lining the sides.) I also felt like I was gypped out of the first precious moments with her, which every one said was the greatest thing, I pushed her out and watched her rushed out of the room, without anyone even confirming that it was indeed a girl. Instead of bonding over breastfeeding, I spent 20 minutes every 3 hours at the pump, knowing that despite it being a royal pain, it was what was best for my child. I didn't get to look forward to baby's first bath, or baby's newborn pictures. Instead I anxiously awaited baby's first surgery, baby's ability to breathe without the ventilator, baby's first poop so she could eat, baby's first nursing. But with every milestone she reached, while different than the norm, brought me great joy and and love for my daughter. I found other ways to bond with my daughter. I'd sit by her bedside and sing to her. I knitted a blanket for her, I told her about life, even though it was meaningless to her, it meant the world to me. My mother helped me find other ways, like tracing her hand in my journal, and spent hours with me helping me modify onesies to work with all her cords and tubes, once she was finally able to wear them. the nurses taught me how to carefully change her diapers while her guts were hanging in a bag over her stomach. When we first got to hold her, she was still on a respirator, post surgery, and due to the hassle of moving the equipment, I was only allowed to hold her once a day, but I held her for hours, as long as I could, knowing that once she was down, I'd have to wait for tomorrow. I clearly remember the day before I first could hold her, when I just sat by her bed crying longing to hold her. I think the nurses felt sorry for me and let me hold her early.

Today my daughter is perfectly healthy, and has had zero complications, and leads a perfectly normal life. (besides the lack of belly button.) She is my best friend, who I love dearly. The difficult start we had brought us closer together, and I feel more bonded with her than I do with my child due at the end of the year. (who so far seems to be perfectly healthy) It was tough, scary, and different than anything I could have imagined, but we survived, and you will too.

I look forward to hearing more of your journey with gastroschisis, and wish you the best of luck. Don't be afraid to take charge of your baby's care and ask the doctors for more information. It's okay to cry and be angry. I hated every other pregnant woman for a long time because they got what I didn't. For some reason my baby was special, and I spent hours sick with worry and bawling my eyes out over my loss. It had never occurred to me that something could go wrong.

My heart goes out to you and your family, and you all will be in my prayers. Let me know if I can be of any help, I know that hardest for me was feeling like I was alone. I knew no one who had birthed a baby with gastroschisis, or any other birth defect, and it made me feel worse.

And lastly, remember, this is not your fault! You could not have done anything different to prevent this or to cause it! A lesson that took me years to learn, and still causes me grief.

Good luck!

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