Shoaib's Story

 

Saturday the 2nd of December 2000 (8.40pm) will always be a special day for us it was the day Shoaib was born. He was so beautiful and sweet, that I could not wait to hold and kiss him. Shoaib was not crying, but just looking around, smiling, and trying to figure everything out. Shoaib was born 3 weeks early weighing 6lbs 12oz.

Shoaib's name was chosen by his dad, it means: He brings out the best qualities in his friends, reaches for the best in life, never greedy, quick to give up his time, practices patients in every day activities, planning ahead is his speciality, but most of all he has a sincere personality.

Shoaib was born with very bad eczema but he was fine until he was 3 months old at which point he picked up a chest infection and could not eat. The doctors told us that it was normal for children to lose their appetite with a chest infection. Shoaib's health got worse day by day and every time he did eat he would throw up everything he had eaten. He was admitted in hospital because he was dehydrated. The doctors did some tests on him and as a result Shoaib had a Naso Gastric tube (NG tube/Feeding tube) put through his nose leading down to his stomach to feed him. Every time I tried to feed Shoaib through his mouth he would cry, choke, and throw up everything he had eaten. The doctors said that they needed to do a barium swallow scan to see if the food was going into Shoaib's stomach and not into his lungs but in the mean time we were only allowed to feed him through the NG tube. Shoaib had a heart murmur but the doctors told us not to worry and that he would grow out of it as he got older.

Shoaib loved playing whilst having a bath. He was like a little fish and one of the nurses named him fishy.

Shoaib also suffered from very bad reflux and was put on to medication to help control it. Due to his reflux Shoaib was finding it hard to sleep and would wake up 2 to 3 times a night to vomit. Most of the time when Shoaib vomited his feeding tube would come out and needed to be put in again. This was usually done at the hospital or the community nurse would come home if it was during the day.

Shoaib was referred to Thorpe Coombe Children's Centre (TCCC) and Great Ormond Street Hospital (GOSH) for further investigation. We were told Shoaib had global development delay and hypotonia.

Shoaib had his first birthday party at McDonald's but he was not very well.

GOSH did a lot of tests to find out what was causing Shoaib's global delay and why he was not eating. All the results came back normal.

Shoaib starting sitting unaided at the age of 15 months and crawling at the age of 26 months (February 2003) after a lot of physiotherapy and massaging. He attended physiotherapy session once a week and the physiotherapist would teach me what to do at home. Shoaib had still not learnt to speak at this age.

Shoaib loved it when we sang songs to him. His favourite was incey wincey spider and if your happy and you know it but he also loved books. He enjoyed being read to and when you finished he wanted the book in his hands so he can chew on it.

Shoaib would only enjoy physio if he had a book in his hand, he even started crawling because he wanted the book.

On 25th December 2002 Shoaib started suffering from epileptic seizures (fits). Two days later Shoaib was admitted into Whipps Cross Hospital. Shoaib's seizures got worse and he needed to be resuscitated. At this point he was put on oxygen for just over a day. He was kept in hospital for one week whilst further tests and brain scans were being done. These came back normal and once again we were sent home with medication.

On 23rd May 2003 Shoaib's NG tube was inserted directly into his stomach because his nose would not stop bleeding due to the tube being inserted so often. At first Shoaib got very ill (after having his tube put direct into his stomach) but then after a few weeks he started gaining weight and getting stronger, his crawling got faster.

On 4th September 2003 Shoaib started attending Corner Stone Nursery. At first I find it hard to leave him because I was so attached to him but Shoaib love going to the nursery and playing with the other children. In December Shoaib was given a Mobi-Rover (a walking frame) and gaiters to help him with his walking. I would put Shoaib in the walker and stand on the other side of the room holding a book (his teacher would do the same at the nursery everyday) after a few weeks Shoaib started moving in his walker.

Shoaib was referred to the ENT clinic in GOSH to have his tonsils and adenoids removed.

On 6th September 2004 Shoaib started attending Brookfield School. On 24th November Shoaib started standing unaided for e few seconds but 3 days later he broke his right leg.

For Shoaib's 4th birthday we took him to Disneyland Paris. Shoaib loved it.

In February 2005 Shoaib started to make attempts to walk. He would take a few steps and then fall. By March Shoaib started walking more fluently (he could take around 20 steps at a time) and he especially enjoyed walking to the car. Shoaib enjoyed going for a drive in the car and he only wanted to sit in the front passengers seat, never in the back. Shoaib started to pay more attention to what was going on around him and increasingly responded to games and songs. His favourite songs were hokey kokey, row row row your boat (he would move his arms to them) and twinkle twinkle little star. Shoaib also enjoyed making a mess whilst playing.

On 30th March 2005 we took Shoaib to Saudi Arabia and then to Pakistan to visit his relatives. We had to come back early because on the 19th of April, Shoaib had to have an operation to remove his tonsils and adenoids. After the operation he had to be put on an oxygen mask during the night because his oxygen level was quiet low. When Shoaib woke up in the morning he was ok and sent home with antibiotics. Then after two weeks Shoaib picked up another chest infection and then the opening for his stomach tube also got infected and so he was put on antibiotics again. Shoaib also had diarrhoea through out this time. On 23rd May 2005 I took Shoaib to see the doctor again. She sent us to Whipps Cross hospital saying that he had asthma and needed oxygen. We got to the hospital at 11am and Shoaib was given nebuliser he fell asleep, then the doctor came to check him and said that oxygen level was still low and that we need to give him oxygen and some steroids to open up his airway and that they wanted him to stay the night and go home in the morning. After Shoaib was given the steroid he reacted very badly and was rush off to be resuscitated, whilst being resuscitated he had a fit and his oxygen level dropped further. The doctors did a chest and heart scan and told us Shoaib had an abnormal heart and that it was not functioning properly and that was the reason why Shoaib had development delay and was always ill. We were told that they was not much that they could do for him because it was too late. Shoaib left us that evening.

I wish that no parent has to ever go through the pain of losing a child. This is the hardest thing I have ever been through.

I miss Shoaib all day, everyday. There is a big empty space in my life now that he has gone. I love him and miss him so much. Shoaib will always be a part of me, and no matter where I go he is with me in my heart and memories. Some people only dream of angels but I held one in my arms and now in my heart.

I am very grateful for 4 years that we were given with Shoaib. No matter how long it had been it will never be enough. Shoaib, thank you for being such a wonderful boy and giving us 4 years of pure love, joy and happiness. Thank you Shoaib for choosing us to be your mummy and daddy, we love you with all our heart and just know one thing that we will be together again one day, until then keep smiling like you always have and enjoy your pain free life.

 
My Shoaib
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