I knew the moment I conceived Jethro, at that moment and the following day. A few weeks later this was confirmed as I had to sit down during a morning yoga class otherwise I would have fainted.
I was working part-time at a college of Natural Therapies and had been studying Yoga Teacher Training for 6 months. I was in my 40th year and Gabriel was almost 2 years old so it was as good a time as any for our 2nd child to make their way into the world.
The first sign we had of what was to come was at my 20-week scan where the radiologist spotted that Jethro’s left kidney was covered in tiny cysts and wasn’t developing properly. I was advised to have a 2nd scan for 2nd opinion and it was confirmed Multi Cystic Dysplastic Kidney. In the best case scenario it will not be present when the child is born, worst case scenario the baby might need surgery to remove the tissue of a malformed organ.
Aside from this, my entire pregnancy was uneventful and easy, but after the 20-week diagnosis, I started having acupuncture twice a week, to help my body better support the baby I was carrying.
At 42 weeks, 40 hours in labour, an epidural and an episiotomy Jethro entered the world on the morning of 23 February 2007. Our determined boy looked very squashed from so many hours fighting to get out.
When they listened to his heart swish instead of beat there were looks between the doctors. He had a very deep pilonidal sinus at the base of his spine and they weren’t sure if his spine was connected at the bottom so that needed to be x-rayed immediately.
The fantastic news when they did scan his kidneys was that he was born with only one large healthy right kidney, his left kidney was not present and no scar tissue at all. I credit my commitment to the ongoing acupuncture treatments for this great result.
Jethro was a voracious feeder, once he got the latch right he would feed endlessly, never quite being full. At 5 months we started giving him the formula to help fill him and that was the end of breastfeeding for him. The first condition that was looked into for Jethro was Prader-Willi Syndrome because of his love of food.
We moved cities right after Jethro was born for Nick to study and found the medical services in our new city really lacking when it came to what we wanted to find out about our son and try and do for him. We moved back to Auckland 10 months later and immediately got back on the list of the same geneticist and paediatrician. When Jethro started having seizures at 15 months our geneticist told us he thought he knew what Jethro’s condition was and that he had diagnosed one other person in New Zealand with it. He asked us for the relevant consents and Jethro’s DNA was sent to France. We were told it would take up to 6 months to get an answer and he advised us not to look up anything at all until the results came back. I’m still not sure how I feel about that advice as we took it and happily buried our heads in the sand. Two of my closest friends looked up MWS and immediately knew upon seeing Dave and Deby’s grandson Chase’s face on the MWS website that this was the correct diagnosis for Jethro, but neither of them felt they could tell us.
And so when we were phoned to say the results had arrived right before Jethro’s 2nd birthday and we were about to go on holiday, we didn’t want anything to potentially spoil our holiday so we went away and went to the appointment with the geneticist when we got back a week later.
When he told us the test was positive Nick and I just sat and starred at him as if he was talking a different language. I don’t remember much else of what was said that day, just that we were given a website address to the MWS google groups that Dave Curry created.
The initial group of parents in that group were an absolute lifeline to me in those early days. And what a relief it was to finally have a diagnosis too, a name for Jethro’s condition that brought with it grief and fear and a determination to give him the best life we possibly can.
Getting Jethro’s seizure medications right through his toddler years was hugely challenging and we turned to a few different types of therapies through that time. Most successfully Jethro had Cranio Sacral Therapy on and off for about 3 years which I felt really helped with seizure recovery. These treatments allowed his body to fully relax and let go of all the tension that builds up in his body when he has seizures. Also a particularly beneficial treatment for the skull and brain in a young child.
From the age of 4 Jethro had numerous surgeries. After the first 2 big ones we pushed our medical team to ensure they would do up to 3 procedures while he was under general anaesthetic, to alleviate numerous hospital visits and too many anaesthetics. He had his corrective surgery for hypospadias at 4yrs, and a bone graft and both feet straightened at 6yrs. Then for the next few years grommets, MRI, dental, saliva gland surgery, EEG, etc. We have only allowed one general anaesthetic every 2 years. Jethro was born with 2 holes in his atria and 2 holes in the ventricles of his heart, he also has a pulmonary stenosis so has needed to be checked by cardiology annually at first and then every 2 years. His heart has grown healthily with him and has never caused him any issues.
Jethro started music therapy at 3 years old and continued for 10 years. He was with a music therapist on his own for the first few years but really responded well to being in a group, so he and 2 of his peers did music therapy sessions together for 2 years which he loved.
One of the hardest things we’ve found is having wonderful people who bring so much to our child’s life come into our life and then for their own personal reasons need to move on. We’ve learned to accept that everyone has a life to lead (and much as we love them and would love to hold onto them we need to let them go), the music therapist moved to the UK with his family.
Jethro also started horse riding at 3 years old and continued that for 10 years too until our local RDA were no longer able to mount and dismount him from the horse safely. Horse riding was always Jethro’s most favourite activity and he was quite devastated to not be able to do it anymore. He has been on a waiting list for another place for 2 years. The wonderful upside to this story is that we now live on the same road as his riding club and after 17 years of trying to secure the funding and relevant consents they are finally building a new covered arena with hoists to mount and dismount so they can provide services to teenagers and adults and not just for children. We hope to have Jethro back to weekly riding some time next year.
Jethro has also had plenty of swimming lessons and loves the water. He participates in Accessible Surfing days twice a year and it was that group of wonderful people who taught us to boogie board with him a few years back, when he was still little enough to do that.
Our family loves the beach and we spend many weekend days at one of the many beautiful beach spots where we live. Jethro now has a beach wheelchair to replace the Koolstride buggy he outgrew so he is able to continue to go everywhere we go.
The other thing Jethro loves is the trampoline (with no safety nets or mats!) he has been bouncing on all 4s since he was 3. Everything happened for Jethro at 3 as once he started crawling he got alot stronger. His older brother Gabriel has always adored him and included him in play. We were advised by the paediatrician our boys had throughout their childhoods to not wrap Jethro in cotton wool and not to fear him getting hurt or having a seizure, never to not do something because of his limitations and so we haven’t. He pointed out that all children hurt themselves or break a limb and that is part of childhood and part of their learning, it was the best advice we were given and Jethro has never been seriously injured in any of the many activities we’ve done with him.
So now Jethro is 15 and he is suddenly very tall and still growing. He was very little when he was younger and we always assumed he was going to be of shorter stature as the MWS stats say. We are tall people so it’s not really a surprise he has almost doubled in height since he was 10. We are now getting used to having a man-child.
He still loves adventures so most birthdays have been an amazing experience rather than parties. Surfing trips, adaptive snow skiing, ten pin bowling, kayaking etc this year however he demanded a party and loved having friends and family over to celebrate.
Jethro is partially toilet trained and has been in a toilet training programme since he was 6. If timed and communicated well he can spend most of his days doing all his wees in the toilet. BMs are still a work in progress but his understanding is so much greater now that he prefers to go on the toilet rather than having a big clean up.
Jethro can communicate his wants and needs despite being non-verbal and is only now starting the process of augmentative communication. He is the happiest boy in the world generally, if he’s not happy we know something is wrong. He gives us the hugest loving hugs when he gets home from school or Dad gets in from work. He has brought so much joy to our family and has a delightfully naughty sense of humour.
He adores his older brother and loves family and friends and particularly our dog we got last year. He loves school and he loves to socialise.
We recently travelled to Queenstown for a fantastic holiday and Jethro loved flying, the helicopter ride we took with the alpine landing and even the zipline swing.
We always felt Jethro came along to make us and everyone he meets better people and this has certainly been the case.
Released September 1, 2022
By Shelley (Jethro’s mom)