The Birth Day
Most parents are blessed with one angel at a time, but we were blessed with two. On 13th of October 2006, I became the proud mama of two beautiful girls, Aleisha and Aleina.
When I first found out about her condition, I felt an overwhelming rush of emotions and cried for a while, before pulling myself together. My mind flitted to my friend Pauline and her daughter Celine, who had Down Syndrome and heart problems. I told myself that if Pauline could do it and millions of others could do it – I didn’t see any reason why I could not.Unfortunately, one of my daughters, Aleisha, was born with cysts in her brain, hence was diagnosed as a special child. Because of her fragile condition she was immediately placed in the NICU.
The First Episode
On 17th of October, we transferred our precious to HKL due to the mounting bills at Gleaneagles. I was told to check in with her so I would know how to feed Aleisha using ryles tube and so I could bond with her. However I wanted to get better (I had just had a C-section) and told the Dr that I needed one week before I could check in. The Dr agreed.
The next day we received a call from HKL, to come down. I could barely walk so I called my husband, Steven, who was having a meeting with his new GM, and told him to go straight to see Dr See.
Dr See then dropped the second bomb. Aleisha’s blood test had revealed that she was also suffering from Dysplastic Kidney with Renal Failure. Dr See informed us that her left kidney was not functioning at all and her right kidney was also very weak. There was nothing much that they could do, as she was just a baby. They told us that her condition was deteriorating, and they could only offer her conservative management and try to make her feel comfortable.
It was around this time that Steven had started his new job too. As you can imagine, it was an extremely stressful period for him; what with his new job, Aleisha’s condition and having to have visit her everyday after work. I was almost sure that he could not handle it. I kept telling Steven to be patient and to give Aleisha all the love that he possibly could as she did not have much time in this world. I kept telling Steven that I loved him and my love and respect for him was just growing more and more each day.
Aleisha was discharged on the 6th of November after 21 days in NICU. She looked very weak and was on the ryles tube.
The Second Episode
On the 19th of November, Aleisha was so weak, so I rang up the Dr. He told me to take her to the hospital but I told him that I had already scheduled a check-up for the next day and I didn’t think that she was that serious…until I found blood in her mouth. We immediately rushed her to the emergency room. The moment I arrived I showed the ER receptionist Aleisha’s blue book and they told me to go to the critical zone. The blue book is where the Dr writes everything about Aleisha illness – every time she was admitted or goes for her check up. I was told to carry this book everywhere so that in case of emergency, the doctor who was attending to Aleisha would know her history.
We were told Aleisha was having sepsis and to be prepared for the worst. With God’s grace Aleisha tolerated the antibiotic given and managed to survive. I was so proud of my little fighter. She was soon discharged with medication.
The Third Episode
On the 20th of December we had a follow up check up with her Neo-Nate team. Everything was okay at the check up, and so we left for home. I was about 1 minute away from pulling up to my driveway, when I received a call to come back as tests had revealed that Aleisha’s calcium level was low. She had to be checked in again. On 22 December, we were told that her kidney was functioning at less than 10% and she was at stage 5 of Chronic Renal Failure. On 30th December, Aleisha was discharged again.
The Fourth Episode
On August 9, Aleisha was admitted back to HKL due to fever, diarrhea and vomiting. She was very weak. The Dr. give her antibiotic and the rest of her medication and she was discharged on August 13.
The Fifth Episode
Aleisha was admitted again on November 25 with fever and cough. In the ward she became hypothermic. With antibiotic Aleisha was discharged three days later. After the hypothermia, she was not able to suck anymore and I had to insert the ryles tube for feeding.
The Final Episode
For the next couple of months, our princess was okay, when suddenly on Friday, 8th February, she started to have breathing problems. We immediately rushed her to the hospital. As I was standing at the door, Aleisha’s face turned pale and I started screaming!
At 2.15 am, we were transferred from the ER to a Ward with Aleisha on oxygen. After Aleisha had settled down, I asked Steven to go home and get some rest, while I stayed in the hospital with Aleisha.
That night, every time I closed my eyes, my heart would start accelerating and preventing me from sleeping. At around 4.15 am, the medical officer came by and told me that Aleisha was very sick and to be prepared for the worst. She asked “Mummy, are you prepared?” I answered “Whether I am prepared or not is not an issue, if God wants to take her, HE will take her.” .
A few hours later, the specialist on duty came by to see her. After reading her medical history, he asked me if I understood her medical condition. I nodded. He then asked if he should close the curtain. I said no. I was still hoping that Aleisha would get well.
An hour later, a coffee-like discharge started coming out out of her nose and mouth. I panicked and called the specialist. He got the nurse to open the tube so that the discharge would come out from the tube.
At 10.00 am I called Steven and told him to get ready to come to the hospital. At 11.00am the coffee ground discharge came out again from her nose and her mouth and I kept on wiping it. When it did not stop, I called the Doctor. I called Steven again but he did not answer his phone. I kept on wiping Aleisha’s mouth and nose and suddenly I saw the nurse and Dr close the curtain. I went out of Aleisha’s cubicle and waited. I knew something was wrong. I sat there crying and waiting and calling Steven, but again Steven did not answer his phone.
After a few minutes, the Specialist came out and said, “We have tried our best. I am sorry. Time of death was 11.25 am.” My tears were rolling down heavily. I went into her cubicle and saw the nurse was taking out her IV drip. I told the nurse to leave me with Aleisha for few minutes. I held her and kissed her. I told her that I loved her very much and my love for her was unconditional. I read a short prayer for her. I also told the nurse not to wrap Aleisha until Steven arrived. I called Steven again but he did not answer his phone again. I called my father and my father too did not answer. I then called my mother and told her that Aleisha had passed away.
Soon Steven arrived. He saw the curtain was closed and I was crying.He dropped everything that he held and went in. He held Aleisha and read prayers to her. After Steven had his time with Aleisha, I told the nurse to continue their work.
The Funeral
We arrived at my parents’ house about 1.30 PM. Everything was ready. I placed Aleisha’s body on the mattress that my mom had prepared for her. At 2.30 PM I carried Aleisha’s body to the bathroom to bathe her. After that was done, we took her to the mosque. After we finished the prayer, Steven carried Aleisha’s body to the graveyard and the burial was done by 4.00 PM.
Feeling So Lost
We arrived home late Saturday night. Just as I was about to go to sleep, I spotted Aleisha’s feeding equipment and my tears started to roll down uncontrollably. Steven was standing beside me and didn’t say a word, but just hugged me. I kept on sobbing until I fell asleep.
Till now, when I have nothing to do, my mind automatically flashes back to the memories I had with her especially the last few days. Everywhere I look, I see Aleisha. It’s painful. Very painful. However life has to go on. Life is short, so to all other parents reading my story, please enjoy every moment that you have with your loved ones.