Baby Savannah our brave survivor
https://www.simcoe.com/community-story/8988172-sebright-couple-seeks-support-for-daughter-with-rare-birth-defect/
Savannah Carmela Lynn Winchester was born on August 28th,2018 at 4:16am at Mount Sinai in Toronto..
During my pregnancy at around 10 weeks I found out from my ultrasound that my baby had a rare condition known as Gastroschisios which is a birth defect of the abdominal (belly) wall. Savannah's intestines were found outside of the her body, exiting through a hole beside the belly button. The hole can be small or large and sometimes other organs, such as the stomach and liver, can also be found outside of the baby's body. But thankfully for Savannah the intestines were just found on the outside of her body only but a lot was out.
It was a lot to take in when I was pregnant working a week up to my due date. Going back and forth to appointments in Toronto at Mount Sinai to see special pregnancy doctors was tiring. Savannah was born 3 weeks early and weighed 6lbs 3oz. After I had delivered her she had to be shipped right off to sick kids so they can wrap her intestines up and keep them cool for when the time come to have surgery. At that time I didn't know if she was going to make it or not.
She had her surgery at just 4 days old. And everything went good with her surgery, except she was in constant pain and she had to be on morphine for that so when I visited her she was always out of it and looked so helpless. During her stay at sick kids she has been admitted to both the Neonatal Intensive Care Unit (NICU) and the Pediatric Intensive Care Unit (PICU), as well as the General Surgery Ward. Her hospital course has been complicated by respiratory distress, tachycardia, tachypnea, and NG feeding. She still remains admitted for ongoing assessment and intervention.
It was hard just having a baby and being taken away from you and not getting that experience to hold your baby for the first time.. I cried and cried for days seeing her so helpless laying there, hooked up to all these wires and being drugged up on morphine. But I knew she was in the best care..
After her birth I stayed at the hospital for 2 nights then got discharged.
After being discharged me and my boyfriend Tom were driving back and forth every weekend to come see her but we couldn't afford to stay in Toronto as it's very expensive and parking is $20 a day- $600 a month. We signed up to stay at the Ronald McDonald House but at the time there was no rooms available so we had to wait on there list; we went 2 weeks before we had gotten on the list and finally excepted in the Ronald McDonald House.
Ronald McDonald House is a Non- profitable Organization in Toronto that accommodate families that have no where to go or cant afford a lot to stay in hotels or drive back and forth every single day while they can go back and forth and see and be with there sick children. I was very fortunate that I had gotten a room there. Ronald McDonald House charges you $15 a day- $450.00 a month so even though it a reasonable price the cost still adds up , the same with food costs down here as well..
I would like more people to be more aware of Savannahs story and get it out there as what she has is a rare condition and they don't have much research on it either that's why I want to raise 10,000 and some of that money will go back to sick kids to help with research in finding out the main cause and also to help with equipment in other things. And the other half will go to Savannah and the cost of accommodation and parking while I'm down here with here, and money to further Savannahs Development and as well as medical costs for the time she is able to go home. Because of her condition Savannah Is in constant Pain to have bowel movements so she might have short bowel syndrome later on down the road and more surgeries.
So please let's help Savannah and other moms and babies that are going through the same thing as me. So don't be afraid to share away and donate as well. Thanks for taking you time to read Savannah's Story.
