Rylee-Hope’s story #LittleHero

Rylee-Hope was born at 37 weeks by emergency C-section on the 5th of September 2019 weighing a tiny 5lb 6oz. Once she was born I was able to see her and hold her for a few minutes before she was taken to the hospital’s NICU. At 1 minute old she was given prostaglandin to keep the duct open and so that her heart would work until surgery was done.

As she was born via emergency C-section I wasn’t able to spend much time with her because I needed to recover. Dad was with her and once I came round he came to tell me she was okay and would be transferred in a few hours. A few hours later she was transferred to the Royal Brompton Hospital, London. It was very late at night so they gave dad a bed to sleep in, in a room right next to Rylee.

On the 6th September Rylee had lots of tests to confirm her heart defects and the extent of them. This will determine how soon surgery is needed and how it would happen. Later that night I was discharged from hospital and could finally meet my baby properly. It was such a special moment seeing her and I even got to hold her.

mum cuddling baby in hospital

The next few days were filled with tests and scans. We sat by her bed and watched her tiny poorly body do nothing much, those days felt the longest days ever. On the 11th September we were told that surgery would be tomorrow, we were very nervous but we knew it was needed. The nurses made that day special for Rylee-Hope and us. She got to wear clothes for the first time in her life, although they were massive on her! We got to have lots and lots of cuddles and we got to do simple but big things like change her nappy.

The next morning on the 12th September 2019 at 8am our 7 day old baby was prepared for her first operation. We went down to theatre and kissed our baby goodbye not knowing how it would go, then we watched her fall asleep. Watching that was such a hard thing to have to watch. We broke down into tears leaving theatre. Rylee-Hope received life-saving open heart surgery! She underwent an aortic arch reconstruction with pulmonary homograft patch VSD (ventricular septal defect), ASD (atrial septal defect) and PDA (Patent ductus arteriosus) ligation via sternotomy on a bypass machine.

This was the hardest day of our lives not knowing if we would ever see our baby again. We had to try to stay as busy as we could, despite just wanting to be in the hospital next to her. At 4 pm Rylee-Hope returned from theatre with a open chest, she needed adrenaline and milrinone, lots more medicine, pacing wires, 4 drains, central line, lots of cannulas and tubes along with being ventilated so her heart could heal without having to do much work to breathe.

baby after heart operation

The road to recovery was a long one with our little warrior. We were discharged from the Royal Brompton then transferred to our local hospital. Once she finally got to go home, unfortunately Rylee-Hope ended up back in hospital a few times due to various reasons.

Today Rylee-Hope is a happy 12 month old who doesn’t stop smiling. If you didn’t know her tough story then, other that her scars, you wouldn’t know a thing was wrong with her.

Rylee-Hope’s heart sadly isn’t healed 100% and never will be. She’s always going to have check ups, scans and tests and eventually another surgery may happen. But we live each day like there is no other and like nothing ever happened because Rylee-Hope is our hero and she deserves the world and more.

Written by Lucy (mum)

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