Gastroschisis

(gas.tros.chi.sis) Support and Resources

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  • May-1-08

    my daughter had gastroschisis

    Posted by slade2sleney

    I have a daughter who is going to be 12 in june 2008. she was born with gastroschisis. i found out she had the condition at my 16 week scan. i was nearly 17 years old and single. she was born in Lewisham hospital and had surgery to fix the problem straight after birth.

    i saw her for the first time aged 8 hours old. she was fed orally for the first time aged 2 weeks and she came home aged 4 weeks. she is a happy and healthy girl who i still look at in amazement every day.

    She doesn`t have a normal belly button but is aware of her birth and why she has a different tummy button. i want you all to know…those of you who are expecting a baby with gastroschisis or have recently given birth…that its not always a dark tunnel. it will be a long and difficult journey but keep positive and enjoy your special, brave child who you are blessed to have.

    i am happy to email anyone personally. email me at sleney@hotmail.co.uk

    sherry sleney

    Apr-18-08

    The Best Thing That Ever Happened to Us!

    Posted by Dean

    At my 20 week scan my partner and I sat amazed in front of the screen watching as the sonographer pointed out all the amazing features of our baby. Little did we know what we were about to be told!

    The sonographer said “i’m just popping out to check some dates”, two minutes later she retured looking very concerned. She sat back down and said “unfortunately I have found a problem and your baby has a hole in it’s stomach around the belly button. The consultant was on his way and would explain more, we were put into a side room and it was the longest 5 minutes ever.

    The consultant explained the baby had a hole to the right hand side of it’s belly button. With little more information given than that, the first question i asked was “does this mean the baby will die”. To which he replied “i can not tell for sure”.

    The next 4 days were a blur and spent most of the time on the internet looking at diffrent options/possibilities. As we all know the internet can be a blessing and a curse, we found good info and terrible info but as we had never heard of this before all information was welcome.

    We then saw consultants, sonographers, surgeons , Counsellors and more. The more people we spoke to the more we understood things were going to be ok (not easy but ok).

    The last months of the pregnancy dragged on and I went into labour naturally at 36 weeks, after 24 hours of labour I was rushed into theatre for a c-section. She (Frankie-Lee) came out moments later very peaceful. We could not hold her, just listen to her as the neonatal nurses cleaned her up ready to go to intensive care.

    My partner managed to take some great footage of her on camera and I cherish it to this day. These were the fisrt moments of my baby’s life and were were metres away from each other!

    We were allowed to hold her before she went down for surgery which was only 1 hour after she was born.

    3 hours later a surgeon came to see us to say she was doing brilliant, she had a primary repair (no silo) and did not even need a ventilator!

    In all we spent 5 weeks in hospital and she (Frankie-Lee) was wondeful. Each day had it’s own challenges and the smallest fall would feel like the end of the world. I soon realised not to think too far in advance and take each day as it comes.

    Frankie -Lee is now a normal 2 year old with all the regular functions. Looking back at our photo’s I sometimes have to ask myself ‘is that poorly little girl really the same one’!

    Frankie-Lee is the best thing that has ever happened to us!