Alfie's Story

From as early as I could remember, my biggest dream in life was to become a mum. I had dreamed of having a family & becoming the best mum I could possibly be. My dream came true, but not in the way I had imagined or dreamt about.

 

At the age of 18, I qualified as an N.N.E.B Nursery Nurse. During my career, I worked within the private day nursery sector, where I specialised in opening baby units within nurseries & building a waiting list. I also worked, as a professional nanny in America & the UK, looking after the children of both a Leicester City football player & Leicester Tiger player. During this journey, I gained a lot of skills, expertise & a deep understanding of childcare and an even stronger desire to become a mum.

My dream of becoming a mum came true at the age of 29 only days after losing Alfie's grandma to cancer. My pregnancy seemed extra special because the universe had taken a beautiful soul back to heaven & blessed us with another at the same time. I was extremely lucky & my pregnancy went smoothly. All seemed well. 

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Alfie’s delivery was very difficult with a 50-hour active labour & emergency cesarean after catching a virus during labour. Alfie was born at 3:15am on the 3rd of December 2006. At the birth, Alfie was given a clean bill of health, and after 4 days of IV antibiotics, in the neonatal ward. I breast fed Alfie & our bond grew stronger every day; we had become a family. I was also treated for the virus & because Alfie didn't seem to be ill we were discharged from hospital. 

For the first few days of being home from the hospital everything seemed to be going smoothly. I slowly became well & we started to settle into our new family routine. Alfie became very poorly at 10 days old, with a temperature, rash, poor appetite, was very upset & unsettled. We learned he had the virus I had contracted during labour & we had 10 days in hospital until Alfie's health improved. At this point we were still oblivious to what lay ahead for Alfie & the family.

Alfie was an extremely calm & easy-going baby. He breast fed extremely well & gained weight exactly how he was meant to. If Alfie could hear you he was calm & relaxed. The perfect 1st baby experience that every parent hopes for until only a couple of days after my 30th birthday on 5th February 2007. 

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Alfie became very unsettled, he had difficulty feeding & started to cry as though his fingers had been trapped in the door. It was an awful sound of desperation & pain which broke my heart. With all the experience I had from my professional career in childcare & the magic powers of being a mummy, I couldn't calm him from crying in this way. Mummy cuddles were not helping & the nightmare began. 


We were admitted into the local hospital's children's ward & the doctors started to investigate what was wrong with our baby boy. We were admitted for 3 days for observation & then discharged because the ward had to close due to staffing issues. We were given a letter to show A&E if we were to bring Alfie back into hospital, to expedite his journey through the department & into the assessment ward.

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When we got home, Alfie's dad & I spoke about how we were not happy with being discharged & decided to go straight back to the hospital. Once there we were transferred to the assessment ward. I politely & firmly explained I wasn't happy with the assessment of our son & that I wanted another consultant to examine Alfie. He was still not feeding, had turned greyish in colour & was still crying in the same heart-breaking way, with pain & desperation, for someone to help him. 


Alfie was dehydrated, so they inserted an NG tube or nasal gastric tube into his nose, which travels down into the stomach to enable us to feed & medicate him. He was given medication for pain as well as a course of antibiotics to help with any infection that he may have. We then experienced a 17 week stay in hospital together until his diagnosis.

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Alfie experienced a countless collection of different tests from x-rays, MRI scans, lumber punctures, ultra-sounds & numerous blood tests. It wasn't until they did a fontanel ultra-sound, through the top of his head, that something was spotted. This gave them a lead as to what may be causing Alfie's pain & discomfort. The brain mass was too white for his age. The brain is white from birth. Each day that passes, the brain matures & develops, which causes the brains colour to turn grey. Our brain is not fully developed & matured until the age of 21. 

These ultra-sound results were given to a neurology consultant to examine. This is when me & Alfie's dad were asked to give blood for genetic testing. They were looking to see if they could find where in our DNA it would reveal the clue as to what was wrong with our beautiful baby boy. They advised us that it may take months to find the information they needed, or they may never find what they needed. Our DNA is extremely complex & it was said "They were looking for a needle in a haystack" We just prayed & asked the universe to help them, to find the information they were looking for. 

While we were in the consultation room, Alfie started having his myoclonic jerks - a type of convulsion. So, we were admitted into the children's ward where they administered Buccal Midazolam, a drug that calms down the electric signals travelling around the body & almost shuts the body down, forcing the myoclonic jerks to stop. This is a very dangerous drug to use & has an extremely high chance of shutting the body down in full. Alfie had to stay in hospital again.

 

Once Alfie was stabilised, we were advised to go home & give ourselves a chance to discuss & process the news we had just been given. I refused to leave Alfie in the hospital alone, so I asked my sister to stay the night with Alfie for us. I gave the hospital staff strict instructions they were not to advise my sister of the diagnosis we had just been given. I wanted to be the person to tell my sister this heart-breaking news & couldn't do it then leave her to look after him over night in the hospital. 

 

That night I think I cried enough tears to fill the ocean more than once. We were devastated, our hearts had been smashed into a million pieces & we went into denial. 

 

Alfie's dad & I tried to talk about what had just been advised & how we were going to tell our families. We tried to sleep but it was impossible. The next day was one of the hardest days I had ever experienced up to that point. We slowly drove around to our parents & siblings’ homes to advise them of our devastating news. Having to say those words over & over again, watching the pain & devastation in their eyes. It still haunts me today. We then went to the hospital & we spoke to my sister. She agreed we did what was necessary & it was the best decision not telling her until we returned to the hospital. 

 

We then experienced a period within the hospital while they changed Alfie's medication & treatment plans. The staff organised the community specialists that would be available to us each time we were able to go home with Alfie. They also introduced us to a member of staff from the local children's hospice named Rainbow's Children's & Young Person's Hospice to come & speak to us. 

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I didn't want to speak with the lady at first. I wasn't ready to accept that Alfie would need their involvement in his care. No-one wants to start speaking to staff from a hospice about a loved one’s care, especially when they are only 5 months old. In time & with some encouragement, I agreed to them joining the team to ensure Alfie had the best care possible. 

Only three weeks passed before the neurology consultant wanted to speak to us again about Alfie's diagnosis in detail. They needed to explain that results were showing they had misdiagnosed Alfie's condition. For a moment our hearts lifted & a spark of hope twinkled in our eye's. 

The conversation, again, would smash our already broken hearts into a gazillion pieces. It was explained that Alfie had a condition named Krabbe Leukodystrophy. This too was a degenerative genetic disorder very similar to the PMD version first diagnosed. But this time, our son was given just 18-24 months to live. 

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So, again, we had to update our family members with the new diagnosis. We were plunged into another state of disbelief & denial.  We were told at the time of diagnosis we were 1 in 3.5 billion to have met with the same defective gene. This gave a 1 in 4 chance to have a baby with this condition & that Alfie was number 48 in the world known to have this diagnosis. It was extremely hard to understand & take in this devastating news. The ocean of tears & indescribable level of pain hit our bodies with an extreme level of force never experienced before.

Life continued within the hospital & we cherished every second because we didn't know when Alfie would gain his angel wings. We would spend our time in hospital being transferred to Rainbow's hospice for a break & then straight back to hospital again. We only had approximately 6 weeks broken into days or a few hours within our home together in his lifetime.  


We did manage to have Alfie's dad's birthday with Alfie, at Twycross Zoo. The only day we experienced a few hours together as a family outside of a medical environment. He was dressed in his little safari dungaree shorts, white T-shirt, little sandals & his safari hat. He looked so cute that day in his big boy clothes. When you are in hospital it is always pj's & vests that are worn. So on the few days in his life that big boy clothes were worn it was a special accomplishment. We did end up back in hospital later that day but we cherished being able to make beautiful & treasured memories

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Rainbow's Children's & Young Person's Hospice was a slice of heaven where earth angels work. The setting is beautiful, the atmosphere is full of love & very calm. Each child or young person is given their own bedroom which has a homely feel to it. There are family lounge areas, an arts & crafts room, hydrotherapy rooms, multi-sensory rooms & a beautiful garden containing multi-sensory planting, windchimes, flags & area for wheelchair fun.We will always hold Rainbow's & it's amazing earth angel staff for their involvement in Alfie's care in our hearts.  They enabled us to leave the hospital setting & spend supported care in a beautiful, homely environment. We always enjoyed being there & would leave there to go back to hospital after each stay.

Alfie's care was extremely complex & his deterioration in his health would mean we didn't have any home time towards the last 4 months of Alfie's life. So the visits to Rainbow's gave us the opportunity to have as close to home time as possible in these last months. 
I would speak to Alfie when alone, holding him on my knee & enjoying a cuddle. I would thank him for choosing me to be his mummy. I would ask him, if possible, to enable us to experience one of every special day within a year. One Mother's Day, Father's Day, Birthday's & Christmas. I would also say to him that I knew he was - & is still, a very special angel sent from heaven on a very special mission. That I knew he couldn't stay for very long. If his mission was coming to an end & he was ready to gain his angel wings it was OK for him to go. But if he could stay long enough for us to experience one of each special day in the year it would be a priceless gift to us all. 

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On the 15th of December 2007, we took ownership of a new car which was more suitable in aiding us get around easily with Alfie & all of his medical equipment. We had been blessed with a rear facing car seat from a charity in Sheffield & we were on our way to collect it & have it fitted. The car didn't have very much petrol so we had to visit the petrol station not far from home. It was then that I received a shock wave deep within my soul that told me it was time for Alfie to return to heaven. 

The ambulances were called & we were on our way to Leicester's A&E department. The ambulance Alfie, his dad & I were in, was being escorted by 4 ambulance cars from the petrol station to the hospital. Sadly, Alfie gained his angel wings that day, his life's mission was complete. He had touched the lives of everyone his soul was destined to meet. He had granted his mum's request to experience one of every special day within the year & gave us 12 extra days as well. For this I will be eternally grateful. It was & will always be the most painful day of my life. 

Alfie & I were transferred later that day, by ambulance, to Rainbow's Children's & Young Person's Hospice. There, Alfie was placed into one of the rooms of rest within the hospice. It was decorated in a very loving way as a child's bedroom. It gave his Dad & I time to process what had happened & to say our "Goodbyes". The staff cared for Alfie & supported us until the day of Alfie's funeral, on the 31st of December 2007.

When the hospice closed for Christmas we were able to stay & to have our family dog stay with us. This enabled our dog to visit Alfie & for her to say her "Goodbyes" as well. During this stay, it also enabled our family & friends, as well as hospital & hospice staff to say "Goodbye". This opportunity was priceless to all. We had a book of remembrance that people wrote the most beautiful messages within. It was also taken to the funeral for others to write their messages in as well. 

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Alfie's life of 12 months & 12 days was a true gift. He gave & received unconditional love. He taught everyone lessons their souls needed to learn. You could see his old, wise soul, deep within his rich, blue, sparkly eyes. His life meant & still means a lot to all who were lucky enough to meet him. But also to all those, who learn about him since his passing.

 

His funeral was beautiful with members of staff from the hospital & hospice reading out poems & sharing their special memories with him. I read out the letters his Dad & I had written and messages from within his book of remembrance. The room was filled to bursting with people & some were stood outside. We let a gold star balloon & 2 of every colour of the rainbow balloons go together outside, which everyone was able to take part

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Alfie was an extremely beautiful & wise soul, who chose both myself & his Dad to be his parents in this special lifetime. He is always around us, watching over us & sending love to us each day. He is being looked after by his Grandma & all our other family members who are in heaven. He plays with some very special babies & young children we met along the way together, in heaven. All the while he waits for us to gain our angel wings & be together again. 

Alfie Jack

03-12-06

15-12-07

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