Amelia's story
Amelia's story
Almost from the moment she was born, Amelia was a smiley little baby. Her mum and dad, Ainslidh and Jamie, have photo after photo of their little girl grinning at the camera.
The East Kilbride family were delighted when mum, Ainslidh, fell pregnant with their second child in 2020. They already had a beautiful one-year-old daughter, Olivia, and were excited to see their family grow.
Ainslidh said: “Amelia was a lovely wee surprise. I didn’t have any issues during my pregnancy and I always say her birth was the most perfect birth. Everything was absolutely fine and Olivia, who was just over two years old at the time, was besotted with her little sister from the moment they met.”
Amelia McMillian was born on 10 April 2021 and seemed like a happy, healthy little baby. She was growing well and hitting all her milestones but when she was six months old, Ainslidh noticed that something wasn’t quite right.
Ainslidh explained: “I was out with my friend in a coffee shop and her wee girl was two months older than Amelia and they were both sitting up on a couch and I noticed that she was slumping a bit. At first, I didn’t think there was anything to worry about but I started looking back at photos in my phone and I could see she was slumping in lots of them.
“In the November of that year, I took her to the doctors as she had an eye infection and while I was there I mentioned to them about Amelia slumping. The doctor felt she was a bit off balance and he decided to phone Wishaw hospital and we got an appointment for the same day.”
When they arrived at the hospital, the consultant wasn’t too concerned and said it was likely it would be a viral infection but told Ainslidh to come back if she had any other concerns or if Amelia got worse.
Ainslidh continued: “Over that weekend, I could just tell something wasn’t right so on the Monday, I took her back to the hospital and they took a blood sample from Amelia and asked us to stay the night.”
Ainslidh could see that something was very wrong with her precious baby girl as Amelia began to struggle with her coordination and couldn’t suck or hold her bottle. Ainslidh also noticed that Amelia would get startled very easily and become hysterical with her body becoming stiff. However, the blood tests came back normal and the family were told that it could be a neurological condition and transferred Amelia to the Queen Elizabeth hospital in Glasgow.
“Everything was moving so quickly and we couldn’t understand what was going on. We thought we could take Amelia to Glasgow in our car but we were told she would have to go in an ambulance,” said Ainslidh.
Little Amelia had further bloods taken and was sent for an MRI as doctors struggled to get to the bottom of what was wrong with her but the family were told that it was very likely to be something serious.
Ainslidh said: “The consultant came into see us and told us it was really bad. I was holding Amelia and I had to give her to Jamie as I thought I was going to faint.
“Jamie asked them what they meant by ‘really bad’ and they said there were severe changes in Amelia’s brain and that it could be a metabolic disorder. The consultant said if she’s got what I think she has then she’s not going to have long.
“I remember thinking, I don’t understand, I just couldn’t grasp what he was saying. We’d only gone to the doctors six days before and now we were being told we were going to lose Amelia. It was unthinkable.”
Amelia faced further tests including an ECG and another MRI but there still wasn’t a clear diagnosis and Ainslidh and Jamie were left anxiously waiting, not knowing if they were going to lose their daughter.
Then Amelia took a turn for the worse as her heart started to fail and doctors weren’t sure if she would recover.
Ainslidh continued: “We thought that was it. We had to say our goodbyes – it was the longest morning ever and we were completely devastated.”
But Amelia proved to be a fighter and was put into a coma to help her little body rest as the team at the hospital tried to get to the bottom of what was causing all her issues.
“It was a complete rollercoaster of emotions as we were told so many different things because Amelia’s medical problems were so complex. We were also referred to Ronald McDonald House so we could be close by to the hospital, which was so helpful and made a big difference,” said Ainslidh.
Amelia seemed to be making small improvements, opening her eyes and was even taken off her ventilator. The family were then told it was likely that Amelia had Mitochondrial disease but they would need to do a DNA test of both Ainslidh and Jamie to confirm the diagnosis.
Mitochondrial disease is the term given to a group of genetic medical disorders caused by mutations in mitochondria, the tiny organelles that are present in nearly every cell in our bodies and which generate the energy we need to live. It can affect different parts of the body, particularly those that require a lot of energy like the brain, heart and liver.
Ainslidh said: “Our DNA results came back on the 16 December 2021 and we were told that both me and Jamie had the same faulty gene – the Bola 3 gene – which is incredibly rare and that Amelia did have Mitochondrial disease. Because it was so rare and so unheard of, they couldn’t tell us what to expect or how long Amelia would live for.
“I found not knowing so hard because I wanted to be prepared but they couldn’t give us the answers we were looking for because Amelia’s condition was so unique.”
Amelia was finally allowed to go home but the family had to keep her as safe as possible because she was so susceptible to infections. They had to go back into a lockdown meaning they couldn’t go out to work or have visitors to their home and Oliva couldn’t go to soft play or nursery.
Just two days before Christmas, the family were told the devastating news that following further tests, Amelia had Mitochondrial dysfunction syndrome 2 which was incredibly rare and that she would die before she was two years old.
Ainslidh said: “I held Amelia and cried the whole day. All I could think of was that this would be the only Christmas we would have with her. It was only a month since I took her to the hospital and I couldn’t believe that our whole world had been ripped apart in such a short space of time.
“It felt so unfair because we’d only just had Amelia and were looking forward to our first Christmas with her and Olivia and to know that it was the only one we were going to get with the four of us, just hurt so much.”
As the family tried to come to terms with the heart-breaking news, Ainslidh and Jamie had to learn how to clean Amelia’s feeding tube and give her a range of complex medicines.
Ainslidh explained: “Olivia even helped me to give Amelia her medicine. She was such a loving big sister and she helped Amelia open her presents on Christmas morning.”
It was during one of Amelia’s stays in hospital in 2022 that the family were told about CHAS and asked if they would like to be referred to the charity.
Ainslidh said: “Initially we brushed it off as we didn’t feel we needed any help but then in May, Amelia developed encephalitis which is inflammation around the brain and she started having seizures and we were exhausted dealing with all her medicines and feeding. So, when CHAS was mentioned again we said yes and in July 2022 we went for a weekend visit to Robin House.”
“We didn’t really know what to expect and were a bit anxious about leaving Amelia with people we didn’t know but as soon as we spoke to the staff in Robin House, we just knew instinctively that we could trust them. They instantly put us at ease and I knew they were going to do their best for Amelia.
“Olivia was with us too and staff told us we could go out for the day with her if we wanted and they would look after Amelia. I was a bit apprehensive at first because I was so used to doing Amelia’s feeds and knew exactly how everything should be done but the team reassured us someone would be with her all the time so we took Olivia to the local sea life centre.
“It was a really great day out and it was so important for us to get some time with Olivia,” Ainslidh explained.
The family were looking forward to getting some time in the pool at Robin House, something they would never have been able to do at their local swimming pool.
Ainslidh said: “The girls had matching swimming costumes on and Olivia loved being in the water with her little sister. It really was amazing and I just remember thinking this was the best thing ever as I knew we’d never have had the chance to experience anything like it if we weren’t at Robin House. Watching the girls together doing something so ordinary, something that most families would take for granted, was the most special experience for us. It’s something I will never forget.”
Those few days in Robin House gave Ainslidh and Jamie time and space to simply be Amelia’s parents and not her carers. They could relax and enjoy time alone with Olivia and also do every day, family activities with both their beautiful children that had seemed impossible before.
Those memories and that time became even more precious as not long after her stay in Robin House, Amelia’s health deteriorated and the couple were told she didn’t have long left to live.
Ainslidh said: “We thought Amelia had a chest infection and she was taken into hospital but then the world crashed around us as a woman from Intensive Care came to speak to us and told us it wasn’t a chest infection but that Amelia’s body was shutting down and she was going to die. It all happened so quickly - it was hard for us to take everything in.
“They asked us where we would like Amelia to die. We’d always said we wanted her to be at home but in that moment we just knew we should go to Robin House.”
The family were taken by ambulance to the hospice and decided to stay in one room all together. Staff made sure they were comfortable and Ainslidh snuggled up in bed with her beloved baby girl.
With her family around her and lying safe in her mum’s arms, Amelia took her last breath on the 29 July 2022. The tiny tot, who her family affectionately called ‘little brown mouse’ because she loved the book ‘The Gruffalo’ was only 15 months old.
Ainslidh said: “It was so peaceful. We were all with her. If we did have to lose Amelia then it really was the perfect end.”
Staff at Robin House helped the family navigate the days following Amelia’s death and gave advice to Ainslidh and Jamie about how to explain what had happened to Olivia who was only three years old at the time. They also helped them arrange to take part in some memory making and casts of Amelia’s hands and feet were made.
Amelia stayed in the hospice’s Rainbow room, a special temperature controlled room that allows families to have time with their child after they have died.
Ainslidh explained: “I’m so thankful for the time we had with Amelia after she had gone. The staff were just amazing and played lullabies and read her stories. It might sound silly because I know she was gone but it was so important for me to know that she was still being looked after and cared for.”
Ainslidh and Jamie met with Amanda the Chaplin at Robin House who helped them put plans in place for Amelia’s funeral.
Ainslidh continued: “We just didn’t know where to start and Amanda helped us arrange a funeral director and plan the service. It was really hard to try to pick songs or anything for the funeral, because Amelia was so young when she died but we knew she loved the book ‘The Gruffalo’ so Amanda asked if I’d like to read it during the service.
“Initially I said yes but a day later I realised I wouldn’t be able to do it. I was really upset because I wanted to read Amelia one last bedtime story but I knew it would be too difficult for me to do on the day. But CHAS were amazing and helped me record the story so it could be played during the funeral. It meant so much to both of us but especially to me because I always loved reading to Amelia and putting on all the silly voices to make her smile.
“When we left Robin House to go to the funeral, staff stood outside the hospice and formed a guard of honour for Amelia. I can’t explain how much it meant to us. We felt so cared for; so looked after and supported in a way that was unique and individual to us.
“Losing Amelia was beyond heart-breaking. She was such a happy baby and we thought everything was fine then all of sudden everything changed and we had to watch her fight just to breathe.
“Mitochondrial disease is so cruel and unfair and in the end it even robbed Amelia of her ability to smile and giggle. We were devastated when that happened because she was always such a smiley baby.
“Olivia was just the best big sister to her and loved helping us look after Amelia. She would lie beside her in the hospital bed and always wanted to do something for her or make her smile. They really just loved each other.”
Since Amelia has died, the family have kept in contact with CHAS and attended the charity’s Memory Walk events, and have raised money for them via the Kiltwalk.
Ainslidh said: “We had the perfect life then everything changed almost in the blink of an eye. After Amelia was diagnosed, things moved so quickly and she was constantly in and out of hospital. We didn’t get a chance to be a family and do all the things you would expect to do with your child. In the space of a month, Amelia went from a normal, healthy child to being on a feeding tube and not being able to move.
“But CHAS gave us something no-one else could – they gave us time with Amelia before and after she died. We got to make memories with her and be a family. We’ll forever be grateful to CHAS and will always treasure the time we had with our ‘little brown mouse'."