Helping Family of Rue O'Regan

Hi my name is Julian O'Regan and I have decided to try and raise funds for my Daughter Rue O'Regan. Unfortunately Rues start to life wasn't the joyful experience that most parents receive. Our little Daughter was diagnosed before birth with gastroischis. This condition meant that her organs from within (which included her intestines in this matter) had breached her tummy wall and grew outside of her body. This meant that through her time in the womb her intestines were floating beside and growing beside her. Often this is a simple procedure to correct but with Rue this was only the beginning of her problems.

While growing her intestines wrapped around in a loop over each other and cut the blood supply. This meant that Rue was then rushed to theatre for an emergency C section to be delivered at 31 weeks as she was starting to die within the womb. When Rue arrived we greeted her with her intestines outside of her body (not a sight most parents want to see) but we knew this was something expected under the circumstances.

Rue was rushed to NICU to be placed in to critical care. Less than 12hrs after her birth she was sent to theatre where majority of her intestines were removed and she was giving a stioma and sent back to NICU on oxygen and again critical care. Things seemed OK for about 6 days untill Rue started to show unhealthy signs and her intestines started to leak gas. Rue started to fill up really puffy and swollen looking. Consultants recommended she would be rushed to theatre again to correct the surgery. After 2 surgeries now Rue was left with even less intestines something in the region of 35cm.

Things were looking OK for Rue for a while, peripheral lines were added to provide her with TPN (man-made nutrition to feed her as she was unable to eat properly due to intestinal reduction) but these lines were failing continuously and she was being poked and proded with new lines at least once every week. A decision was made finally to add Rue with a broviac line but this was held off for a long period of time.

While Rue was in NICU she picked up a serious infection that prevented her from going for her Broviac sooner than we wanted. This infection that she picked up was between 3 premature babies in NICU which unfortunately 2 of the babies who caught this infection passed away. Rue was placed on 3 Antibiotics to try kill the infection over a period of 6 weeks or more. This was the beginning of something that we did not expect.

Rue survived NICU and was moved in to Belfast Royal Childrens hospital. In the beginning she met her markers and continued to meet her markers untill she started to decline. All of a sudden nose bleeds were continuos and vomiting up blood. We were concerned about this but it would come and go. As the nose bleeds persisted along with vomiting up blood Rue then started to bleed from her stioma. This was then very very concerning. An investigation was made and contact was made with Birmingham City childrens hospital.

Birmingham requested to see Rue straight away, Rue and her mother Dion were transported via Air ambulance and transported from airport to hospital via ambulance. As expected everyone loved Rue upon arrival and said how beautiful and smiley she was :)

Eventually I arrived a few days later to meet with consultants who informed us of the terrible news. Rue is now suffering with liver disease and is deteriating quite badly. Expected from all the TPN and Antibiotics designed to help her but under the stress that Rue has faced it has deteriated her. Rue will need 4 organs transplanted to help her survival but we have also been given the harsh truth that her expectations of life are very low. Asking for 1 Donor is hard enough never mind 4 organs at only 7months old. We have been informed that basically finding these organs will be a long and hard stretch of time to have anyone come forward. This means that Rue needs to stay alive long enough for her operation. If Rue is successful in finding a donor she needs to make sure she's strong enough and also her body doesn't reject her donor.

As Rues Father I ask with an open heart to raise funds to help with travel (spending £600 a month on fuel for cars), accommodation, support for Rues Mother who is staying full time with Rue without any notice of when she's getting home. Rues Mother has made a massive sacrifice from her income to help be there to look after Rue. The funds will help support us through this stressful time as a family. We want to be there best we can for Rue with the odds against us. Cost of living has also impacted us greatly with these circumstances.

Thankyou :)