On the 20th of April 2013 my sister went into labour three weeks early and my baby nephew was born at 1:30am.
One week earlier my sister began having a few contractions so she went to the hospital. When a scan was performed the doctors noticed that the baby’s small intestine appeared to be blocked, so my sister was transferred to the hospital. The surgeon said baby Jailan had bowel atresia and that when he was 12 hours old he would be sent to theatre to cut out the blockage and reattach the intestines. The doctor was confident, and we were optimistic.
My sister went into early labour a few days later and Jailan was born weighing 2.6kg. What a beautiful baby he was too. He looked absolutely perfect and fighting fit. Parents were doing well and we were all proud to be with her and Jailan’s dad every step of the way.
Later that day the surgeons performed the operation. I remember it so clearly, I was talking to my sister when she got the call from theatre that he was out after just over a hour into it. Smiles flashed across everyone’s faces: it must have been very straightforward, as we’d been told these operations usually take three hours. What happened next will forever haunt us. The surgeons gave us the most horrific and shocking news: Unfortunately, the tissue of his bowel had died off and there was nothing they could do.
We were informed that while in the womb, a blood clot formed at the top of his small intestine which stopped the oxygen and killed off all of his bowel. Jailan would never be able to eat or drink and would starve to death.
We contacted leading gastrologists who have performed small intestine transplants in the USA and elsewhere but we were told it was impossible. Operations like this had never been performed on a newborn and, in any case, there was a low success rate. Also it takes months of preparation for such an operation and Jailan just wouldn’t survive that long.
We were moved to the palliative care unit where my youngest sister, mother and I stayed day and night, not leaving my sister, her partner or Jailan’s side.
We met with the doctors and nurses of the palliative team, who explained to us that baby would have a tube down into his belly to drain the stomach acid out and that he would constantly have morphine upped daily for pain relief. So that was it. Never in my wildest dreams did I think this actually happened to babies and young children.
During the time Jailan spent with us he was surrounded by absolute love. We made sure he had more than just days in the hospital and he got to experience the fresh, cool air that descended upon the evenings, the warmth and brightness of the sun at the family picnic he was taken to, walks in the pram, a drive in the car that rhythmically rocked him to sleep, and the clear black night sky filled with brightly shining stars that looked down on him.
My sister and her partner got to have some beautiful memories of their son. People we had never meet were even offering their services to the family. A kind photographer offered a free shoot with Jailan when she heard the sad news, and we’re so grateful for the photos she took, which captured Jailan just as he was: perfect.
Jailan was so strong and fought all the way. After 13 days he passed away with all of us by his side. Words will never describe the love we all feel for Jailan, and we miss him every minute of every day. He was in our lives for such a short time but made a huge impact and we feel blessed to have had him in our lives.
I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you appreciate them when they’re right, you believe lies so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can fall together.
― Marilyn Monroe