Millie was born 12th January 2012 she was 12 days late and weighed a healthy 8lb 13oz. My labour had been a breeze compared with her older brother. Labour was no fuss in the birthing pool and with only the aid of gas and air our beautiful baby daughter had arrived. Millie was the image of her daddy and had the most beautiful red hair.
It was only a few minutes after the birth that we noticed that when Millie cried she made a squeaky noise, and later on in the day it was obvious to us both that she was struggling to feed . The maternity nurses just put it down to her swallowing mucus from the birthing pool and told us not to be too concerned as it was a common occurrence with a water birth. After one night in hospital and once the standard sight and hearing tests were completed we went home the next day to meet her big brother Sam and the rest of the family. We were all so excited and couldn't wait to start our new life together.
At only 6 days old we rung NHS direct as Millie's breathing suddenly became fast and raspy. Although she didn't seem to be in any sort of distress an ambulance was arranged to take her to our local hospital St Helier as a precaution. After a few tests Millie was diagnosed with having a mild case of pneumonia after an X-ray had shown a shadow on her lungs. She was kept in hospital for a week and was treated with a dose of antibiotics. While there my husband and I voiced our concerns over the squeaky sound that was noticeable in her breathing. They felt it was nothing to be concerned about as it could be linked to the pneumonia or just simply be a floppy larynx that would eventually re correct itself in time. As a precaution though Millie was referred to an Ear Nose and Throat specialist to havea second opinion.
By 5 weeks Millie was still very difficult to feed. She would get very upset and refuse her bottles. When she did eventually take a bottle it seemed to take forever and once she had finished feeding she would immediately be very sick and bring every ounce back up again. It was visible to us that Millie was beginning to suffer. She looked exhausted, and her overall body tone looked so weak .She was very floppy and her eyes seemed to wander all over. It was after numerous phone calls and advice from our health visitor that it was suggested that we went back to A and E as her feeding had reached a stage where it was a concern to everyone.
Millie stayed in hospital for a further 8 days and was diagnosed with acid reflux . Her poor body tone and lack of development was put down to the affects of pneumonia and the reflux that she was battling against had taken a toll on her body. She was put on a course of medication to combat the reflux and an alternative form of milk to give her the vital nutrients that her body was lacking. Her doctors felt that she was playing catch up and that with the additional diagnosis and medicines to treat it in time she would become more comfortable and steadily improve. It was at this stay in St Helier that we were informed for the first time that her lactate levels in her blood tests were high. Yet her doctors felt that it was not unusual as she had been through an awful lot in such a short time and were not overly concerned. While there was not the immediate improvement that all parents at this point wish for their child she did seem more stable and we even got to see her first smile. Smiles were something we didn't see often, I was so pleased to have caught her first smile on camera.
Sadly though after only a few days at home we rushed Millie back to hospital as she refused to feed at all. Despite additional input and various forms of medicines to combat her reflux and a variety of milks to help her feed nothing ever seemed to work. She seemed to be in an incredible amount of pain throughout the day and night. For someone so weak she would use every ounce of strength to roll over and fling herself from shoulder to shoulder to highlight how uncomfortable she had became. Every bit of comfort we tried to give her was refused and would infuriate her even more and make matters worse. It was incredibly distressing for all to watch and my husband and I felt so helpless .
At this point the Doctors were once again concerned with her lack of improvement and the high lactate levels that were indicated in Millie's blood tests . They felt that she should be immediately referred to the Evelina Children's Hospital at St Thomas's hospital in London as she showed signs of a metabolic condition. In the meantime it was agreed that every effort was made to make her comfortable until a bed became available there.
Millie was transferred to the Evelina and was placed under the care of Dr Roshni Vara. It was at this stage that it was explained to us that Millie showed signs of Mitochondrial Disease. An energy disorder that could explain her lack of tone, movement and the development problems she was having regarding her eyesight and floppy larynx.
We were told that she would have to undergo a muscle biopsy, a possible lumber punch and an MRI scan to see if they could find further evidence of the disorder as the only evidence to suggest the case was her high lactate levels and lack of tone in the body and her eyes.
Sadly it was also explained to us that the disease was incurable and life limiting and the only thing they could do medically was to provide her with symptom management care.
Despite looking into the disease through various websites suggested to us we still refused to believe that this was the case despite the similarities in the cases we read about. We clung onto the hope that it was her reflux and the addition of having pneumonia that was the cause of all her problems. And that once they had found a correct medicine to control her reflux and a miracle milk that she would digest she would improve and steadily become the healthy little girl that we knew she could be.
But sadly things took a turn for the worse when Millie went off for her MRI scan and suffered an unexpected cardiac arrest in the preparation theatre. Once again everyone seemed puzzled as to why this happened so suddenly. It was watching her recovering in PICU that we admitted to ourselves for the first time that she was seriously ill. Millie was now only 9 weeks old.
After coming out of PICU Millie had a muscle and skin biopsy done and an ENT specialist confirmed that her loud breathing was not a floppy larynx but that she had vocal chord bio palsy. Once again a possible influence of Mitochondrial Disease.
Millie left Evelina's after a few weeks. She was fitted with a nasal tube to ensure we could feed her safely and avoid her problematic airway which was a source of discomfort for her and a possible influence of her reflux and agitation to feeding. It was hoped that she may eventually put on vital weight this way and in turn it would aid her eventual development. In the meantime we were looking to the muscle biopsy results to further confirm if she had the disease and what action to take next.
I was hoping everyone was wrong and our baby girl was going to be okay that she just needed to come home and put on some weight.
Before we left we met Dr Mike Champion Consultant of Metabolic's who told us that despite the bad outlook the disease could have it can affect all kids differently. In some cases kids were known to overcome the odds and surpass the expectations of doctors and parents alike and have some sort of quality of life for any given amount of time. We could only hope that Millie could be in the same bracket,and we were determined to do whatever we could do to help her along the way.
We had Millie at home for nearly 4 weeks before we were back in hospital .We had no idea it was to be the last time she would of been at home.We saw that she was getting worse and it was evident that there was something very wrong!! .She was gaining weight but whatever movement she had before was even less as a result. She rapidly deteriorated, breathing erratically once more and once again appearing to be in excruciating pain.
In hospital Millie's oxygen levels were dangerously low and she could not stop sweating yet felt cold. After time in an oxygen box she was rushed back to PICU in the Evelina Hospital and it felt like we were back to square one as the muscle biopsy result came back normal .Yet everyone still felt Millie was suffering from Mitochondrial Disease until finally her MRI scan confirmed evidence of a shadow on her basal ganglia. Dr Champion explained that this part of the brain is the control centre of the body and explained her lack of sight, and her lack of tone or movement.
Millie showed what a fighter and strong little girl she was all the way through but unfortunately her condition got worse and palliative care was brought in. She began to have severe nerve cramps called dystonia and suffered various epileptic seizures throughout the day. Despite various levels of medication both forms proved to be too hard to control. Soon her heart rate begun to fluctuate and her breathing problems returned. She would hold her breath in intervals if she became agitated which meant comforting her with a simple cuddle or any sort of affection was virtually impossible and out of bounds. Millie had a tracheostomy fitted to aid her breathing and to see if she settled more but unfortunately it didn't make any difference and she became reliant on a low level of oxygen running all the time in her trachy in order to keep her oxygen levels up. Millie had a gastrostomy / jejostomy fitted and was fed via a pump to try and put some much needed weight on.
At this point we were told to make memories and Millie had a lovely diary given to us by the hospital that the nurses wrote in regularly about her days on the wards. As well as the nurses we as a family wrote about her time there to show her older brother that we were all part of Millie's life here at one time or other.
Despite all the problems she had Millie was truly beautiful inside and out.She had the most amazing red hair and blue eyes.She became a little star on the HDU ward where she stayed.She went up and down from HDU to PICU so many times that she became well known. Nurses would fight to look after her even though they knew they would be kept on their toes all day. Those who didn't look after her would still come to see her in the hope they could have a rare cuddle ,smile or tickle. She was known as the pink princess due to my obsession with making sure she had enough pink in her little wardrobe.
We had one last day together where the three of us got to spend the day with Millie and along with a nurse we took her outside for the first time in 13 weeks to the park opposite the hospital. It was that very night that Millie's breathing and her heart rate showed signs that she was losing her fight. She peacefully passed away in our arms the following morning on the 30th July 2012 at only 6 and half months old.
Millie will always be part of us and touched so many lives with her short time here. We are both incredibly proud of our little girl. Even though she was so poorly she continued to amaze us with the big personality she possessed. She was tough, determined, stubborn yet at times so sweet in the face of it all.
The Lily Foundation was recommended to us by staff at the hospital and was a great resource for us as it helped us see what we were facing.Together with the support and advice of both Liz and Alison as well as the different experiences of the other parents stories on the Inspiration page gave us that little bit of hope at a time when there didn't appear to be any.The Lily Foundation is so important to families like us that as at this moment we still don't have an answer as all tests have came back normal. The only evidence is the shadow discovered in her MRI scan. Anything else could take years to reach us with an answer.
We raise money in Millie's memory for the Lily Foundation as we want to help other families with getting answers to this cruel life limiting disease.
Our beautiful daughter Millie and Sam's little sister he calls Millie Moo was only with us for 6 months we miss her so very much but she will be in our hearts forever.
Tracy, Chris and Sam Coombes