Annabelle was born at 10:30 pm on November 1st, 2016 at 34 weeks gestation. She weighed only 4lb 4oz. Annabelle was brought into the world early by an emergency caesarean section as a result of reduced feral movements which arose due to pre-eclampsia. Pre-eclampsia is a condition which affects a small proportion of pregnant women and while the cause of it is unknown it is thought to occur when there is a problem with the placenta.
After being in and out of hospital for scans, monitoring and numerous checks for 2 weeks prior, it was decided that our little girl wasn’t happy where she was and needed to be delivered.
Annabelle was delivered breech and needed resuscitating. It took several minutes to get her to take her first breath. She was transferred to the Special Care Baby Unit with the support of oxygen. A cranial ultrasound revealed a grade 1 brain bleed which resolved prior to her discharge and she had phototherapy on day 2 due to being jaundiced. After a couple of days in special care Annabelle started to thrive and the staff were amazed at how well she was doing. Everything seemed great and Annabelle was discharged on the eighth day of her life.
The next few months everything was going well. Annabelle did battle with a cow’s milk protein allergy which caused her pain and discomfort and she also suffered from reflux causing her to vomit several times a day (which we now know was a symptom of her Cerebral Palsy and the lack of tone in her stomach muscles) but once we knew how to manage this and removed dairy from her diet, things became easier.
As first time parents you watch everything your child does, encourage them to hit their milestones and brag to your family and friends about how well they are doing. Concerns about Annabelle’s development began, however, when she was still not able to sit without assistance by 9 months old. She was also doing various things that just seemed ‘different’: for example she had strange uncontrollable movements, she favored her right arm over the left and her hands were regularly clenched in fists. We put it down to Annabelle’s prematurity but we were secretly concerned and spent hours upon hours scouring the internet to research possible causes of the signs she was exhibiting. While Cerebral Palsy was at the front of our minds, it was something that was not spoken of.
Cerebral Palsy and the Diagnosis
Cerebral Palsy is the umbrella terms for lifelong conditions which affect movement caused by a brain injury or abnormal brain development, which occurs around the time of birth. Annabelle was formally diagnosed with Cerebral Palsy just after her first birthday. While the diagnoses was not a shock, it was extremely hard for us to absorb. For the past four months, we have spent time coming to terms with the diagnosis and learning about the journey which lies ahead of us.
Annabelle is still not able to sit without assistance, she is not able to crawl, she is not able to stand and she is not able to walk. All four of Annabelle’s limbs are affected as well as her trunk.
Explaining Annabelle’s ‘differences’ to others is hard as our emotions often take over, but we are hoping that over time it will become easier. We want to share Annabelle’s journey to help raise awareness of the daily challenges that children with Cerebral Palsy face.
Living with Cerebral Palsy
Over the last four months we have had numerous hospital appointments, brain scans (EEG and MRI) and therapy sessions, all of which have helped to put the pieces of Annabelle’s puzzle together. This support has made her stronger, but only time will tell how ‘different’ she will be. No one child with Cerebral Palsy is affected in the same way and consequently, it is impossible to predict the future.
Annabelle attends physiotherapy, speech and language therapy through the NHS who have also provided her with her Jenx Corner Seat and have ordered her a standing frame to enable her to have some mobility as she grows. Annabelle has recently benefitted from the work of two charities, Dame Vera Lynn Children’s Charity and Whoopsadaisy, both of which specialize in helping children with Cerebral Palsy and other motor disorders. They provide Annabelle with Conductive Education and also Music Therapy. Every morning Annabelle is required to do various stretches to help loosen her muscles and on a daily basis. Annabelle does therapy at home which we incorporate into play to make it more manageable and fun for her.
We are adapting to deal with the ‘different’ life Annabelle is going to live as a result of Cerebral Palsy. We know that as a family, with unconditional love for each other, we will help Annabelle to reach her full potential.
She may be ‘Different’ but she will be ‘Able’!