Chloe’s Story - Chapter 6
This has been a long time coming - the final chapter in Chloe’s back story from Chloe’s Dad, Jamie. Except of course, it’s not the final chapter, it’s only the beginning. With your kind donations and support, we can improve this little girl’s life, and that of her family. Thank you, as always, for reading and if you missed Chapter 5, please click here to catch up.
Chloe is amazing; she is so bright, alert and engaging, with a huge beautiful smile that lights up the room. She is happy, although don’t let her small stature mislead you, she will let you know when she is unhappy or she wants something - a grit and determination I’m sure she gets from her mother! Her life is not going to be without challenge, Chloe has Spastic Quadriplegic Cerebral Palsy and severe Global Development Delay.
As I mentioned before, we were to a certain extent prepared for the twins to be delivered early. Early in the pregnancy we were informed of the risk of developing a condition called twin to twin transfusion syndrome (TTTS), where twins that share a placenta are at risk of having unequal share of the placental blood vessels, which can in some cases lead to one of the twins having too much blood and one having too little. This can lead to interventions being necessary very rapidly. In our case, the twins were showing some signs of this throughout the pregnancy as their growth was not always equal; Chloe was the smaller twin and Phoebe slightly larger - however growth restriction alone was not reason enough to intervene and the twins were monitored closely to watch for any further signs.
We were booked in for a planned caesarean at 32 weeks - just before Christmas - but we didn’t quite make it till then; it was 30 weeks and 3 days when we were told the tragic news. When the twins were delivered, it was clear that Chloe was very seriously ill and it was later explained to us that there had been a case of late onset twin to twin transfusion and Phoebe had been the recipient of too much blood and Chloe had not had enough. This is what had led to Chloe being born pale and lifeless, she had become the ‘donor twin’ and had been starved of oxygen rich blood, while Phoebe had been given too much.
At the time, we were just focusing on the positive: Chloe was alive and fighting. It was only later that we realised that Chloe may live with the lifelong effects of those few minutes or hours without enough oxygen and the idea that we could be facing a diagnosis of cerebral palsy was introduced.
We know now that life for Chloe will be tough. At the age of four she is non-verbal and can’t walk, crawl or sit unaided. She is reliant on help for all of her care needs, she is still bottle fed on special nutritionally complete milk feed and can have only pureed food (around the consistency you’d typically give a 7-month-old baby). Due to her feeding difficulties, she will likely at some point need a PEG (a direct feeding tube into her stomach) and will need surgery on her hips because the lack of standing and walking has affected her bone development and her hips are prone to dislocation. She is on multiple medications to ease her pain and has already undergone some Botox surgeries to relax her muscles. She is under the care of the occupational therapists, physiotherapists, speech and language therapists and neurologists, amongst others. We have already had discussions about house adaptations that Chloe will need for the future such as hoists, her own hospital-style bed, access for carers in the future, maybe a lift if she is upstairs. Chloe is unlikely to be able to learn to walk or talk, but that won’t stop us from trying and giving her every opportunity to be able to.
She goes to a special education school for children with physical disabilities in Bromsgrove, where they have been working to help her stand with the support of a standing frame and have fantastic facilities like a hydrotherapy pool and use technology to help her communicate. This is one of the areas where there are opportunities to help her, she has shown some promise using technologies that can track her eyes for communication. This technology could transform Chloe’s life if she could learn to harness it. From communication to using her eyes to potential directional control of a wheelchair if she could master it.
There is also potential for surgery for Chloe, which at worst would ease her pain and at best could give her the chance to stand, to then have the opportunity to learn to walk in some fashion. This would be unbelievable from where we are today. This surgery is called SDR (selective dorsal rhizotomy). It would only be available if Chloe met the criteria which includes having the resources to provide extensive private physiotherapy after surgery, otherwise the procedure would be pointless. Chloe is a determined little girl and all I wish for her is the opportunity to try anything that can give her a better life.
So, you've heard the story so far. This leaves me to talk briefly about the other support we've been fortunate enough to receive: that of our family and friends. I love them all, more than they will ever know. How do you describe that feeling when you are with people and you are just comfortable being you? No pressure, no stress, just around people who at every turn have your best interests at heart. I am fortunate to have their love, given freely without compromise or need for instant reciprocation for self-gratification or adulation, just genuine love. Family bonds and lifelong friendships like a big extended family in my world, our memories intertwined, the soundtrack of your life in pictures, there for the euphoric highs and for the deepest of lows. You know who you are, I love you and I will be there for you as you have for me, forever.
Thank you all, for reading.
Please consider donating to Chloe's cause: CLICK HERE to show your support.