Millie – the story so far
Gemma Crocombe, Millie’s Mother
In June 2005 we found out we were expecting again.
We had our first scan booked in as normal for 12 weeks at Basildon, during this scan it was noticed that the fluid on the back of Millie’s neck was enlarged and the sonographers referred us immediately to Kings College Hospital in London.
We were told that the extra fluid can indicate that the baby could have downs syndrome and they would suggested that I should have an invasive test called amniocentesis, which is a huge needle into the amniotic sac to collect some fluid for testing. This in itself can cause complications but we went ahead with the test at 14 weeks.
The tests for downs syndrome and a few other known syndromes came back negative and we were told that we were having another little girl. The hospital stressed to us that ‘the baby’ could be perfectly healthy but, could also have other syndromes that are rare that they obviously can’t test for and did we want to continue the pregnancy, which we did.
The pregnancy progressed normally, and at 38 weeks I was booked in for a growth scan of the baby as our previous daughter (Ellie) was a 10lb 1oz baby, so they wanted to keep a check on the size of this one. It was during this scan that we were delivered some upsetting news that the baby had enlarged ventricles and extra fluid on the brain, and we were to be urgently referred back to Kings again.
Kings suggested I had an MRI scan at 39 weeks feet first, as you can imagine that was a daunting thought but the scan went ahead and we waited for the results. We were with the Professor of Fetal Medicine when we were told our baby had Agenesis of the Corpus Callosum (ACC) for short.
Children who have this have the total absence of the area of the brain that connects the two cerebal hemispheres. So, in short, the baby could have mild to severe learning difficulties physically and mentally but there were cases of children and adults leading fairly normal lives; in some rare cases girls can also have an extremely rare syndrome called Aicardi Syndrome. As you can imagine this was a massive blow and a lot to take in. It was then suggested to us that on these medical terms we could terminate the pregnancy if we wished, which as I was near on 40 weeks pregnant this was in no way an option for us whatsoever. The baby, ‘Millie’ which she had been named at that point, was our little girl no matter what was to await us.
On the 15th January 2006, a week late, a beautiful little Millie Moo was born weighing in at 9lb 140z. It was a complicated birth in which Millie had to be resuscitated but fortunately complications had been expected so we had the relevant doctors at the birth. Millie spent only a few hours in the PICU and was later allowed to join me.
The coming months were very tough, coming to terms with the fact we didn’t know how our daughter was going to develop and how poorly she would be, how it would affect us and our other two children, it was a very trying time. But equally we were totally smitten with our new daughter.
Millie was doing ok, we had noticed certain things that she was either doing, or physical differences to our other two children and we were being referred to the relevant services for these things. At two months old we thought Millie was showing signs of seizures, we rushed her to hospital but were basically laughed at for it, but we knew – we knew she was fitting. I called the Geneticist at Kings and got her to call Basildon to get Millie the help she needed which in turn got us referred to Great Ormond Street (GOSH). At two and a half months old Millie was diagnosed at GOSH with Aicardi Syndrome, we were devastated. When it was first mentioned at Kings we had googled it and it seemed the most horrific thing ever to read, the children didn’t live past five years old, they were severely disabled, couldn’t walk or talk and were tube fed. We were so upset but like before we had to accept the news and try and move on with the new diagnosis and get Millie the relevant help she needed, while trying to reassure Hollie and Ellie that everything was ok, and ourselves.
The first year was the hardest, we had appointment after appointment, spent hours on the phone and sitting in hospitals. Millie became extremely famous at Basildon hospital being in there so much as she suffered from relentless pneumonia’s, our life was taken over by it all.
More and more diagnoses were given, scoliosis, reflux, unsafe swallow, low muscle tone and much more. Surgeries were booked for feeding tubes and scoliosis spinal surgeries. I spent days/weeks out of the house staying with Millie in hospitals while Tony had to run around after the other two children. Well by now it was 3 others – yes we were mad and obviously still in love. It’s funny as most people were shocked when Rosie was on her way but having Millie didn’t stop us wanting more children, it just changed our lives.
In 2008 we had the worst months of our lives – Millie has aspirated into her lungs and was extremely poorly, she was rushed to St Marys Intensive Care Unit, who we are raising money for, and put on a life support machine. We had never, ever been so scared in our whole lives, she was so ill. I went with her in the ambulance while Tony followed on with the girls. I was sat down when we arrived and was told I had an extremely poorly little girl who, may not survive. They were doing all they could for her and it was up to her to respond to the medications and treatment. To be told that your two year old may die was devastating, it broke our hearts. They had her on the most aggressive life support machine they had and it literally chucked her up and down on the bed, it was the most horrific sight we’ve ever seen in our lives. We had to prepare ourselves and the other girls that their sister may not survive. Lucky for us, our little fighter did survive and after two weeks on the ventilator made a full recovery. It’s thanks to the amazing staff at St Marys that our Millie is with us now.
Great Ormond Street deal with all of Millie’s care. She sees the neurology team for seizures, Ophthalmology, Orthopaedics, Orthotics, Gastro team and many more. Millie’s had many operations there and they quite frankly keep her alive. GOSH is an amazing hospital for children and although they are a specialist hospital, are always on the end of the phone. Millie goes up to GOSH 6-7 times a year for various appointments and check-ups and has done since she was diagnosed with Aicardi Syndrome age two and a half months.
Millie’s life and ours is still a roller coaster and, I’m assuming, always will be. We don’t ever know what’s around the corner for us or her - she can be fine one minute and very poorly the next. Having places like Little Havens hospice, to care for her like a home from home truly is a life line. It’s very hard to let anyone look after your children let alone a child who cannot communicate with you, can’t tell you if she’s upset or doesn’t like what someone’s done to her, it was very hard to let her go, but also the best thing we’ve ever done. Little Havens is a very special place who unfortunately are not government funded at all, they solely rely on donations. Yes, a hospice is a hard place to visit, sometimes there are children there who sadly pass away, but they do their very best to make a horrendous situation comfortable and make you feel at ease. T
hey truly are amazing.
We are also fundraising for Millie’s school, Beacon Hill. The school are equally amazing and also don’t get all the funding they deserve. They go above and beyond to help the children and the staff are wonderful. Not only has Millie had some wonderful teachers we have made some wonderful friends from the school. Everyone there is always willing to help and offer advice if, and when it’s needed.
Now 10½, Millie is doing well. She’s on steroids for her seizures and she’s responding well to them. When her seizures are at bay she can have a better quality of life and has even been sitting up for short periods which is amazing. Her care is 24/7 and always will be, it’s like having a ten year old new born really. Millie is nil by mouth, so totally relies on tube feeds via a gastrostomy which feeds her directly into her stomach. Millie is incontinent, can’t walk, talk, and is CVI registered blind, although she can definitely see some things.
Millie is an inspiration to many, she is gorgeous, funny and most who meet her fall in love with her. Although life can be hard we wouldn’t be without her or our other three gorgeous girls who dote on their sister, and who are the most amazing sisters to Millie.