On the 6th of June 2018, our daughter Laurel was born at The Rosie Hospital in Cambridge. Laurel was born with an exomphalos (also known as omphalocele), this is a condition where the abdomen does not close therefore some organs remain outside of the body enclosed in a sac. Laurel's exomphalos was classified as major including Liver, stomach and bowel, with members of the NICU medical team stating it was the largest they had ever seen. This condition had been diagnosed at our 12 week scan along with congenital scoliosis and heart defects, all part of a rare condition called OEIS complex that affects only 1 in 400,000. Three weeks before our planned caesarean date, we were informed that the prognosis for Laurel was looking poor and in their words "She has a big fight on her hands".
As soon as Laurel was born she was taken straight to the Neonatal intensive care unit (where all the staff are absolutely AMAZING). She had some ups and downs along the way but she continued to exceed everyone's expectations!! She stayed in NICU for a total of 13 weeks before coming home to where she belongs and continues to do brilliantly well.
On the day she was born we was offered a room in Chestnut house which is a 'Home from home' provided by The Sick Childrens Trust'. We had this room for 6 weeks in total, taking away a lot of anxiety around having to return home. This room was based in the hospital allowing us to be close to Laurel at all times. This meant we had no time or travel restrictions to when we could see her, even if it was us going to sit with her at 2am just for 10 minutes. One night when she had deteriorated with suspected sepsis, my husband and I sat in that room physically and emotionally hurting at the thought that we might not have her for very long. Therefore being onsite allowed us to spend as much time together as possible as a family. The Sick Childrens Trust recognises that its not normal to be away from your seriously ill child and therefore aims to keep families together.
So myself and Laurel (in her sling) are going to be walking 91 miles throughout January. 91 miles because she spent 91 days in NICU, and January because this is Exomphalos awareness month. Therefore we are hoping to raise awareness of the condition and raise money for a well deserving cause. Also, I want Laurel to look back in the future and see how she and all you who donate, have helped other families like ours.
The Sick Childrens Trust run entirely on voluntary donations and receive no government funding. To provide a room for a family costs them £30 a night. So just for our stay alone it cost £1260!! We are aiming to raise £840 as this would provide a family with 4 weeks to be close to their sick child. Plus on Justgiving the charity will receive any donations that are made each week meaning the money will help families over the Christmas period!!
For anyone who is interested we do have a facebook page which we set up during pregnancy, that we update with Laurel's progress. You can follow at 'Eggs Journey....Bump and beyond.'
Thank you for any donation, no matter how big or small it will really make a difference to families like ours in their time of need.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.
Kelly's A mile for each day of NICU stay
We will be walking 91 miles throughout January for The Sick Children's Trust because they enabled us to stay close to NICU for 6 weeks
We provide free high-quality accommodation to support families of children in hospital
Charity Registration No. 284416