This entry was posted on Friday, July 25th, 2008 at 3:53 am and is filed under Birth Stories, Your Questions. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
Gastroschisis
(gas.tros.chi.sis) Support and Resources
New Granddaughter with liver outside of body
Our granddaughter was born at 37 weeks (induced) on July 22, 2008 with her liver outside of her body along with the gastroschisis. She also has a cleft lip and palate. She weighed 4 lbs 15 ozs and is 17 3/4 inches long. I have read the post on here and am encouraged about the gastroschisis.
My question is, does anyone know of anyone born with the liver outside of the body also. This really concerns us.  The doctors told us they handled it as delicately and as little as possible.  They placed it along with the gastroschisis in the silo. I guess it is a wait and see game at this point and I know it has only been a couple of days since she has been born, but I was trying to get any information I could. Please help if you have in any information I would appreciate it.
6 Responses to “New Granddaughter with liver outside of body”
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July 25th, 2008 at 12:56 pm
Hi Grandma, congratulations on the birth of your granddaughter.
With regards to the liver. It is NOT uncommon to have organs other than the intestines protruding through, and it is handled in exactly the same way. There are many Gastroschisis babies that have livers, lungs and even kidneys protruding, don`t worry yourself too much, the ICU nursing staff are the best there is and have amazing skills and dedication.
August 9th, 2008 at 7:02 am
I was born with my liver on the outside of my body in 1979. I lived an entire year with the liver on the outside. Then just after I was a year old they did surgery and placed the liver back in almost the same area. Its healthy and functioning great. This has not stopped me at all from doing sports. I have been very athletic in my life so far, I competed in Track and Field, and was a competitive figure skater. I now have been a fitness instructor and personal trainer. My health history doesn’t stop here, I have a minor hurnia at age 7 (I think it was), diagnosed with matrial valve prolaspe and tacardia with my heart at age 11 and ended up with a breast deformaty (growth) problem at age 21. Please don’t feel sorry for me, I just want everyone to know that no matter what never give up or let anything get in the way of what you want to do in life, stay positive and have fun, I did.
August 11th, 2008 at 4:13 am
My granddaughter had surgery on July 27th to put her intestines and liver back into her body. They were not able to close her stomache wall all the way due to it causing to much pressure on her internal organs so they put mesh to close her stomach wall and said this will last for six month. She has a hernia from this, which they say they will fix at a later date.
They started her feeds last Monday at 1 milleter per hour and they are up to 8 milleters per hour now. She has had bowel movements and her incision from the surgery looks great.
She was on a ventilator for 3 days and then they removed her from it, but every since her surgery she has had problems with her heart rate and respiration rate being really high. I do realize that some of this is due to her intestines being back inside of her body and it making it crowded in there, but how long does this go on for? They put her back on oxygen to help her breath which doesn’t seem to do much. Her alarms still go off and her quality of oxygen reads as low quality.
They really don’t tell grandparent’s much and I understand this do to parents rights and my son gets upset if I ask to many questions. I don’t want to upset him and I don’t want to be one of those grandma’s that overstep their boundaries, but I am extremely worrried about how long her little heart and lungs can withstand working so hard. She will be three weeks old on August 11th.
August 11th, 2008 at 4:19 am
Thank you Shanban for your information. It sounds like you have let nothing get in your way and that is awesome. I think a positive attitude makes a great difference in how your life turns out. I wish you the best in the days and years to come. I am making a daily journal for my little granddaughter, who one day I think will want to read it. I will include these postings and I think she will be inspired by your story. Thanks again, Grandma
August 11th, 2008 at 12:43 pm
Grandma, is your daily Journal online? If it is post the address here and i will happily add it to the Gastroschisis Blogs list.
August 11th, 2008 at 4:03 pm
Try not to worry there is always a chance with gastroschisis that other organs will be out to this is not uncommon. The main thing is that it is in the silo bag as it will now start to go back in . Once it is in an closed you can then look at seeing if it is working.