Interview by Mummy Social team member Victoria Green.
Kaytee Jones is a registered nurse and single mum to her beautiful little boy Jaxon who’s 1 ½ years old. Jaxon was born with a multitude of medical complications and requires round the clock care.
Hi Kaytee, thanks so much for speaking with me. Your son Jaxon was born with quite a few medical complications, are you able to talk me through the different ones he has?
When he was born he actually passed all health checks. At 6 days old I rushed him to hospital and then over the next year I received one diagnosis after the other. In the first week of tests it was revealed he had grade 4 bilateral kidney reflux, a possible hole in the heart, two cysts on his brain and cytomegalovirus. Cytomegalovirus indicating potential disability but more commonly hearing and sight lost which Jaxon does not yet have problems with but has regular checks for. At 3 months old I received a genetic diagnosis of 1p36 deletion syndrome which is a missing part of a chromosome leading to varying learning disabilities affecting 1 in every 5-10,000 births though many are undiagnosed. About a month later a spontaneous check on his heart revealed a hypertrophic cardiomyopathy which makes him at high risk of a sudden cardiac arrest with nothing but management of symptoms and observation to go forward with. A few months later suffering from continuously vomiting daily and it down to reflux resulting in weight loss and after going from breast fed to bottle fed to fed through a tube in his nose, an operation to stop his vomiting was attempted. He had to go to a specialist hospital for the operation due to his heart and whilst putting him under anaesthetic they decided to put a more permanent feeding tube into his stomach and perform a couple of other procedures to try and prevent more urine infections as he had had 8 in 8 months with the expected cause being his kidney reflux. During this operation Jaxon had two cardiac arrests. A few months later more genetic tests led to a diagnosis of Barrter Syndrome explaining why he could not manage his electrolytes; mainly sodium and potassium for which we had constant battles with.
Were these complications highlighted during your pregnancy or were they only discovered after he was born? How did you feel and did you receive any support?
I didn’t have the smoothest pregnancy. I had polyhydramnios – excessive amniotic fluid. Tests that were done (including for cytomegalovirus) were negative so I expected a healthy baby. In the final trimester scans revealed one larger kidney and ureter and we saw a surgeon about potential operations Jaxon may need if the extra fluid was due to a blockage in the babies anatomy but he passed all health checks when born.
People define support differently. I’ve never been offered any official counselling to process it all but I did take myself for counselling through my GP which took about 7 months and then I was discharged for missing a session when he went back into hospital. We do have a lovely woman from the bereavement team that visits, support at a local hospice and the community nurse that all help but I definitely think their should be more structured available and accessible qualified counsellors for parents in hospital.
What does the future look like for Jaxon with regards to his health? Do you have a full prognosis? Are there more steps that need to be taken such as surgeries or long term treatment?
We don’t have a full prognosis, no one has ever tried to tell us what he will or won’t do or his life expectancy but it seems he will either have a short life or live with long term disability. He’s just started sitting up at 17 months and is extremely underweight. We got out of hospital just before his first birthday and aside from 3 short stays over Christmas he’s done extremely well and I am so so proud. More than that – he is happy.
Can you try to explain to us, how parenting a child with additional needs has changed your life? What do you find the hardest thing to deal with? Do you feel it has changed you as a person?
For me, like many, it’s changed my life because I can’t work even after just gaining my nursing degree. Jaxon has a 24 hours care plan, he’s fed through his tube day and night we also have appointments for each consultant (heart, kidney and general), physiotherapy, occupational therapy, speech and language therapy, dieticians, and more every week as our normal. It’s all consuming. Not just physically but emotionally too, and financially. Without a doubt the hardest thing to deal with is fear of the worst case scenario at the back of your mind, even on your best days still being filled with a parent to a healthy child’s worst nightmare – their child not being able to do what their peers can. Not being able to think “will they be a footballer?” “Will they go to university?”. Instead just hoping and praying they stay with you to their 16th birthday and beyond. Also, the not knowing. Not knowing what life would have been for them if they didn’t have disabilities. Not knowing if in a year they’ll get stronger or weaker. Not knowing if they’ll ever learn to walk, talk, eat. It’s defiantly changed me as a person. I’m more of everything. More grateful, more caring, more compassionate, more understanding, more resilient, stronger. I definitely find happiness in the little things in life, on my worst days I hug him and I’m filled with gratitude that he’s still by my side. When everyday you’re grateful your child is alive, it awakens a new awareness and a love deeper than anything. Equally, sometimes you have days you think “I shouldn’t have to be grateful my child’s alive, that shouldn’t even be a thing. My child should be running around and covering the walls with food”. It’s a constant battle of the minds.
I’ve seen on your blog that you enjoy travelling and have been able to take Jaxon with you. Where have you two been, what extra items do you need to pack and what things do you need to consider before travelling?
At one point Jaxon was being tested for a condition that would give him one year life expectancy. We were in hospital and I swore if it was positive (most doctors expected it to be) I would get him out somehow and travel the world to show him as much as I could in the time we had. Though the test came back as negative I’ve never really got over the fear of losing him, especially with his heart. I’ve taken him to Tenerife, Cape Verde and Madrid. We have to be careful where we go ensuring there’s a good local hospital (Cape Verde was a total winging it situ) and he has a medical trunk full of feeding suppliers; containers, tubes, feed, syringes, medication, dressings and more. Plus medical letters to say he’s safe to fly from a Dr, the medical equipment that’s needed from the dietician and a summary of all his diagnosis. I also have to book special assistance as a single mum travelling alone with him and all his medical bags plus he’s often attached to a pump feeding him on the plane.
Parenting any child is a full time job, however when you add additional needs into the mix I should imagine you do not get too much time to yourself. Do you get much of a chance for ‘me time’? If so, what do you like to do to relax and unwind?
Because of Jaxon’s needs we do get carers 60 hours a week (which if you saw his card plan you’d see isn’t a lot!) most of the time I use these hours to get sleep (48 of the hours is 4 night shifts) and during the day hours (12 a week) I often have to do Jaxon’s admin; appointments, forms, requests, orders, stock. However if it’s getting on top I usually know when to use some of these hours to go out with friends or do something for me.
Kaytee is blogging her and Jaxon’s travels and sharing their story on YouTube which follow on from the blogs she writes in real-time on www.thenursemum.com. For daily doses of their reality you can follow them on Kaytee’s instagram page @thenursemum.