Caring for a Child with Spastic Quadriplegia
This is a guest blog post written by Catherine Atkins for Disabled Living. Catherine and her son Jack are regular visitors at our Kidz to Adultz Middle event. Jack has spastic quadriplegia, a type of cerebral palsy that effects all four limbs.
In 2010 I was delighted to find out that I was expecting my first child via sperm donor. I’m in a same sex relationship but had been desperate for children for years. The pregnancy was perfect, I thoroughly enjoyed getting bigger and showing that I was obviously pregnant. I loved all the extra attention I was getting and was over the moon when I got to feel the first kicks. The midwives were happy with how things were progressing and actively encouraged me to have a water birth at a midwifery run unit in Birmingham.
Giving Birth to Jack
I went into a natural labour 11 days after my due date and the water acted as a wonderful source of pain relief. Jack was born pretty easily in the water. However, he was a funny colour when he was pushed under the water to me and he was not breathing or moving at all. Jack had managed to get his umbilical cord wrapped around his neck twice and suffered a lack of oxygen for over 20 minutes. The next 9 hours were the most painful of my life.
Jack was taken away to be resuscitated whilst my partner and I waited for news as to whether he would pull through. We were eventually called into a small side room to talk with the doctor. They confirmed that due to the lack of oxygen Jack had suffered, it was extremely unlikely that he would survive the night and if by some miracle he did, then the brain damage would be that great that he would have no quality of life.
A Smile that Melts Hearts
Jack was transported to another hospital to receive cooling treatment for 72 hours, which is where his body temperature is kept at a lower than normal rate in order to prevent any further brain damage. Every morning we waited for the doctors to do their rounds and every morning it was touch and go whether Jack would survive the day. At one point it was looking likely that he had renal failure and we were told that would almost certainly mean the end to our precious bundle. Fortunately for us all, Jack is made of extremely strong stuff and he pulled through and has gone from strength to strength. His smile melts everybody’s hearts and his cheeky sense of humour is hilarious.
Admittedly he is still classified as severely disabled as he is unable to walk or talk. He has spastic quadriplegia, a type of cerebral palsy that effects all four limbs. He has minimal head control and abnormal arm movements. His legs are extremely stiff and his feet are misshapen. Jack is fed purely through his PEG as he has a very poor swallow and no gag reflex which makes any attempt to eat or drink extremely dangerous. Jack also has a nasal pharyngeal airway (NPA) in permanent situ. This is because his tongue muscles are weak and his tongue will flop over his airway if it is not held back by the NPA.
So yes he isn’t without problems. However the biggest challenge we have and are facing at this time is Jack’s epilepsy. The epilepsy began just before his third birthday. One night we were all asleep (Jack has always slept next to me as he requires regular suctioning throughout the day and night), I woke to find that Jack was having a full on tonic clonic seizure. Having never had any experience with seizures in the past, we weren’t really sure what was happening so we called an ambulance. The seizure lasted over 40 minutes and was terrifying but the doctors managed to stabilise him eventually and he was allowed home the following day.
A Learning Curve
Since then Jack has been in and out of hospital with various types of seizures. I learnt early on to ensure I knew the correct way of pronouncing the names of the cocktail of medications that Jack was taking in order to gain any kind of confidence from the number of doctors we met along our journey. The professionals I have met along the way have taught me so much. We were lucky enough to have a friend who is the best paediatric physio in the world (in my opinion anyway) and she has helped us immensely. Without her, I know we would not be where we are now so a huge thank you to Alison.
I have often been asked if I have a medical background due to being able to spout out so much information about Jack’s condition and spastic quadriplegia. This couldn’t be further from the truth, I used to faint at the sight of needles or blood and couldn’t even watch casualty on the television! When you’re faced with such a situation you learn so much as you go along.
I’ve watched Jack go through having 8 large needles of Botox injected into the backs of his legs twice a year in order to help with his spastic quadriplegia. I change Jack’s PEG every three months (although I admit I still feel rather queasy when faced with an unnatural gaping hole leading straight into his tummy but every time I change it I’m getting that bit better), I can change his NPA with my eyes shut and do things that no mother should ever have to do.
The Most Rewarding Job
I would have had to return to work if Jack had been born healthy. However, because of the situation, I gave up my job and became Jacks full time carer, the most rewarding and wonderful job ever. I’ve since gone on to have a beautiful daughter and a rather mischievous little boy. When my third child was born we arranged to have his stem cells collected from the placenta in the hope that one day Jack might be stable enough to travel to America to have stem cell treatment. There’s no guarantees but a stem cell treatment may help improve Jacks abilities.
What I am trying to say is that you can do anything when you really put your mind to it. Whatever life throws at you there are always ways to turn negatives into positives. If ever I feel a bit down, Jack’s beautiful smile turns my frown upside down! I am one extremely lucky mummy!