I found out I was having twins fairly early in my pregnancy, we were both surprised and delighted, even more so when we found out that we were expecting a boy and a girl. I have a 12 year old son already so the thought of a girl was amazing.
I had a fairly normal pregnancy but the consultant spotted an issue with Annie around 26 weeks. The scans showed that she was growing at a slower rate than her brother. At 30 weeks I was noticing a real difference between the movements of each twin, Henry was very mobile but some days I hardly felt Annie at all. I went to hospital a few times and after being monitored and scanned felt assured that she was ok. They kept monitoring her growth through scans over the following weeks and thought I was just having a petite baby girl.
At 33 weeks, the nurses identified signs of pre-eclampsia and after a week in hospital the twins were delivered via emergency c section on October 28th. Henry was first out and cried straight away as you would expect from any new born. When Annie was born, there was no cry. The nurse and consultant took Tom over to Annie to show him that she was very small and needed to be intubated because she wasn’t breathing.
The following hours and days became a blur of heart ache and worry for my baby girl. The doctors and nurses were good at keeping us informed but it seemed like for every doctor that entered the room, we were delivered even more bad news. To start with, they saw Annie’s throat was ‘closed’, the reason she was unable to breath, so she had an operation at just a few hours old to open her throat and have a tracheoscopy. It wasn’t until later that evening that the doctors told us of her congenital heart defect, describing it as ‘scrambled’. They advised us to switch to palliative care but I knew I had to give her a chance to fight. I asked the doctors to treat Annie but to make sure she never suffered or was in pain.
The first time I went to see Annie in NICU I broke my heart crying. Although I was able to touch her I couldn’t hold her in my arms, kiss her head and tell her it was going to be ok. It was so difficult walking into the NICU ward to begin with, the noises of the machines, the beeping and alarms were too much to bare and I hated leaving her there when it was time to go. I discharged myself from hospital, against medical advice, a few days later so I could be there for Annie. Henry spent time with his dad so I could go and be with Annie all day.
Things were tough, I had just had twins, a c section, Henry at home thriving whilst Annie was in hospital desperately ill. I spent all day at the hospital and then came home in the evenings to care for my oldest son and Henry. I was physically and mentally exhausted but as a mother I needed to push through. I was very lucky to have the support of my mum and sister who both dedicated themselves to making sure Henry was well cared for whilst I was at the hospital with Annie.
Although the outlook was bleak, Annie seemed to be responding well to treatment. The nurses in the NICU ward were utterly amazing. Not only did they take marvellous care of Annie, they also made it a point to take care of my welfare too. The nurses took time to talk to me about Annie, her brothers and general nonsense to make sure each day became more and more bearable.
I got to hold Annie in my arms for the first time when she was 5 days old. It was an experience with mixed emotions. I was overwhelmed by my feelings of love and joy for her but at the same time, all of the tubes and wires that were attached to her terrified me! Gradually I found a routine and soon Annie was allowed to come out of her incubator for around an hour a day for cuddles. These times were so special for me and what I looked forward to in each difficult day. I talked, read books and sang tunes to Annie. She soon started to respond to my voice and my touch, she knew I was her mummy and that bought so much happiness for me.
When Annie was around 10 days old, she developed and intestinal infection referred to as NEC. It became clear very quickly that Annie was not well at all and started to fight very hard to stay with us. They changed her ventilator to give her more breathing support but this meant she could not come out of her incubator for our precious cuddles. We met with the consultants who told us how bad this infection could be and its effects, essentially we were preparing for the worst. However, 24 hours later, Annie was fighting the infection against all odds and started to pick up. I was so proud of her courage and bravery. It would be another 10 days before I got to cuddle my Annie again.
Once Annie was clear of the infection, she was transferred to Bristol to be assessed by the cardiac specialists. I posted on Facebook that Annie was being transferred to receive some ‘heart mending rainbow glitter’, this is where her fund raising name of ‘Annie’s Rainbows’ came from. It was a very difficult time, I was there with Annie whilst Henry and George were back in Cardiff. The guilt I felt was incredible,
The team at Bristol were fantastic and took great care of Annie. We were there for a week and in that time we were given a ray of hope! The consultant told us that they could fix anything, including Annie’s heart, they just needed her to grow and reach a weight of 5 kilos.
Annie was transferred back to Cardiff to ‘grow’. Over the next few weeks Annie was doing well, as well as could be considering her condition and part of me began to relax a little about the future. However, Annie wasn’t growing or putting on weight. The doctors thought that because her heart was working so hard that she was burning more calories than she was consuming. There was a delicate balance to be had because they couldn’t give her too much liquid but at the same time she needed enough nourishment to grow and if she put on weight too quickly it would put extra pressure on heart.
We met with consultants, dieticians and doctors to decide the best way forward. The team were always very honest with us, no matter how difficult it was to hear. The team decided to add supplements to Annie’s feeds to give her the extra calories she needed to grow. It was a risky move but the only option available to get Annie to the weight needed so she could have her operation.
At just over 5 weeks, Annie was diagnosed with Smith Lemli Opitz Syndrome. I quickly hit the internet and realised that Annie’s long term outlook was not especially bright but there was still hope. I joined an amazing page on Facebook of families who have children with the SLOS syndrome. The support I received from them straight away was humbling and amazing. It gave me a chance to see the battles and joy I was facing with Annie, real stories from real people.
At 6 weeks old, Annie developed another NEC infection. Although we had the same discussions with the consultants as we did when she had the infection previously, this time it just felt different. The doctors struggled to put lines into her so she could receive the treatment she desperately needed and even when they did manage it, they would close soon after. Her poor little body became bruised from the needles and puncture wounds and her lungs began to fill with fluid. Just as before, her ventilator was changed to support her breathing.
Annie was different this time too. I can’t put my finger on it but it felt like she was trying to tell me something. On the day before she died, I told my sister that I thought Annie was tired of fighting. On December 14th, I got to the hospital early and spent the whole day with Annie reading The Velveteen Rabbit to her and talking about Christmas. Annie looked at me and I just knew.
At around 3pm Annie deteriorated rapidly and went into multiple organ failure. As agonising and heart wrenching as it was, we made the decision to let Annie call the shots and go to her forever sleep.
We went to a quiet room where Annie was bought to us. All of her lines and tubes were removed, I cuddled her on my chest whilst humming the song Lazy Bones to her, something I had always sang to her. I wanted her to know it was her mummy and that she was loved and safe. Annie slipped away peacefully in my arms. That time was so precious to me and I’m grateful to have had it. It’s the memories that are holding my broken heart together. I found a strange sense of peace once she had gone, I felt that I gave her the chance to fight and the chance to stop, when she wanted.
Everyone became very fond of Annie and even the doctors began to say ‘Annie will do what Annie will do’, recognising that she was a very strong willed little girl.
The following days were a blur but Henry and George kept me busy and focused. People mentioned how difficult it must have been being so close to Christmas. Truth is, every day hurt! December 25th was just another one to get through best I could.
I publicly posted Annie’s story on Facebook as it unfolded because I was so very proud of my daughter. The kindness and support of family, friends and complete strangers was overwhelming and in scary times with social media, I received nothing but positivity from everyone
I needed something positive to come out of everything so decided to set up Annie’s Rainbow fund in aid of the Noah’s Ark Charity Tiny Lives Appeal. I am now focused on raising £13k to buy a new incubator for the appeal in the hope that Annie’s short life can help other babies in need of special care in the future. I have given the fund a year to run, finishing on December 14th 2017, the day Annie died.
I sing the song lazy bones to Henry too, he smiles each time. There will always be a bond between them and she will always be remembered and celebrated for the beautiful, courageous little girl that she was.
Kirsty – Annie’s Mum
For more information about the Tiny Lives Appeal click here.
