Our beautiful little boy was born on the 3rd of November 2002. He was our first child and he looked absolutely beautiful. The midwives felt Nathan looked blue and was too labored in his breathing. He was taken straight to Princess Margaret Hospital (the children’s’ hospital in Perth) where he was intubated immediately, with wires and tubes coming out of his navel and lines in his arms. To see my baby the next day on a ventilator was horrific. (I had to stay at Osborne Park hospital overnight. It was very upsetting watching all the other mums with their newborns, I yearned for Nathan so much) For days, all the doctors thought Nathan had immature lungs (as he was 5 weeks premature) until the fifth day came and Nathan became increasingly unwell. Without warning, he crashed. He went into heart failure, respiratory distress and total organ failure. To see doctors and nurses clambering around him was more than my husband Brian and I could bear. From that moment, a tight knot of worry and absolute terror lay in my stomach, and unknown to me at the time, wouldn’t leave me for the next 4 months.
Brian and I were guided into a side room by the cardiologist. The first words from his mouth were
“THE NEWS IS NOT GOOD”
We then sat through the worst meeting of lives as we were told Nathan had a major heart condition, which could not be cured. Nathan was diagnosed with HLHS (Hypo plastic left heart syndrome) Basically, Nathan only had half a heart. We were asked to seriously consider compassionate care, which meant we could take Nathan home to die peacefully with his mummy and daddy, or we wait for him to stabilize and travel to Melbourne to the Royal Children’s Hospital. A cardiothoracic surgeon would perform the first of a three staged palliative open heart surgeries. It was called a Norwood and their success with the first operation was at the time 80 percent. However, the children remained so physiologically unstable after the Norwood, the chances of getting to the second open heart (at four months called the BCPS) were at the time around 60 percent.
I remember my world being in shock and looking out of this office down to the world below. Everything seemed so unreal, everything was moving so slow. We told the original doctor we were choosing Melbourne. He told us we needed to wait on some brain scans to check to see if Nathan had brain damage. We got the all clear later on that day and we were ready to go to Melbourne.
We boarded a QANTAS domestic jet on the Sunday. Nathan had a row of seats in first class stripped back so he could travel in style in his humidicrib, along with his doctor and Nurse. We sat six rows back. The first hurdle was the flight itself. As the pressure changed in the plane, so too did the pressures in Nathan’s pumps (for his drugs) which was extremely risky.
We arrived in Melbourne. Nathan traveled behind us in an Ambulance (we were in a taxi) My greatest fear was that I would see the Ambulance turn it’s sirens on and scream past me. I just wanted to be with my little son.
The next four months were very intense. Nathan remained on a ventilator and in ICU for months. His first surgery went well, however, his heart was so fragile that during the surgery, every time his doctor tried to sew his heart, it would tear and bleed. Nathan’s chest remained open for four days to allow the swelling to reduce. Imagine one of the worst days of your life. That intensity and pressure was around us all the time as Nathan was fighting so bravely for his life. Many times we were told he was not going to live. With HLHS, babies can arrest at any time without warning. (In between the first and second stage) In his notes, we found a letter addressed to us saying…We are sorry for the passing of Nathan. Would you consider donating his organs…which we would have done….That’s how close he was to dying.
Nathan was a fighter. He developed a life threatening bowel condition called NEC which meant part of his bowel could be rotting. He suffered from three different dangerous heart arrhythmias, had an external pacemaker to “chase” the rhythms, endured three life threatening blood infections and needed more operations to fix his diaphragm, which was hindering his ability to get off the ventilator.
Eventually, Nathan made it to the BCPS. He stabilized and within two weeks we were back home in Perth with a gorgeous (but blue) baby boy!
For me, as Nathan’s mother, I couldn’t help but wonder what the future held for this little boy. After so many months of living a life or death situation, being unable to control anything in the hospital, and constantly hearing doctors telling me…Just enjoy him while you can, I decided to reclaim my life and happiness. On a sunny day walking with Nathan in the pram, and tears in my eyes, I consciously decided to change what I could control, seeing as I couldn’t change the fact Nathan was on palliative care with a unknown future and lifespan. I needed to believe Nathan was going to live a long and happy life. For him to do that, he needed a happy mummy and daddy. As my attitude towards things changed, so too did my life.
Over the next few years, Nathan and I embraced everything that was thrown at us. He was diagnosed with verbal dyspraxia and learnt sign language, which we both loved. He had physio appointments (because of his heart he has extremely poor muscle tone) he never crawled and walked at the age of two…which is pretty good really) speech, cardiologist, dietician (his heart used so much energy to work, he wasn’t gaining weight. He was put on a high fat diet where McDonald’s and chocolate became the norm) you name it, we did it and loved it all. We didn’t see it as appointments, rather, going to the hospital to play!
THE START OF SCOLIOSIS
One day, as Nathan was standing at the T.V., Brian commented to me that his back wasn’t straight. He was about 12 months old. I looked and could see a slight curve, but couldn’t make out if it was my imagination, or if it was really there. We also noticed a rib protruding so took him off to see his pediatrician at PMH. He told us a lot of babies who have open heart surgery often have a rib protruding and to keep an eye on it. We were later referred to orthopedics who decided to X-ray him. The first x-ray showed a curve of 40 degrees. Nathan was put into a TLSO brace for 16 hours a day and it was decided to “watch and wait” as many scoliosis can resolve themselves.
After two years, Nathan’s curve had progressed to 55-60 degrees. Nathan’s MRI and CT finally revealed the diagnosis. He had SEVERE INFANTILE SCOLIOSIS. We were told to come back in 6 months time with the only real option being surgery. Most research indicated this may have been a good option, but in Nathan’s case, it wasn’t. Surgery on a child with HLHS is extremely risky. So risky our cardiologist wasn’t sure if we should proceed with that option. Where did that leave Nathan? The deformity was getting larger and every time I saw it I shuddered and wondered how it was affecting his cardiopulmonary function. I couldn’t take it any longer.
I began researching scoliosis. The first website I saw was the SCOLIOSIS ASSOCCIATION OF AUSTRALIA. I read a story about a little girl called Ella, who also had infantile scoliosis and was receiving early treatment with a series of plaster casts. Her curve had reduced by this treatment, something the TLSO bracing had never done for Nathan. I then emailed S.A.O.A. asking for help. I was given two contacts from families who had been in the same situation as Nathan. Both had amazing stories to tell about the success of the early treatment method..
I managed to speak directly to the ARISE Scoliosis Research Trust in Stanmore, U.K., and knew in my heart that a series of plaster jackets was Nathan’s only chance. I was devastated to discover that early treatment with serial plaster casting can CURE infantile scoliosis if the treatment had began before the age of 24 months. Dr. Mehta’s long study, of which I obtained a copy, proves this. After 2 years of age, the likelihood of surgery is inevitable. Nathan was three and a half. The jackets would however, hold the curve until he was a lot older.
There was only one catch. The treatment was available in London. The decision to go was an easy one, and compared to what we had been through with Nathan before, the stress couldn’t compare. What was hard was coming up with $30,000 to get there. We contacted channel seven, who had covered six stories on Nathan years ago for his heart, who literally knocked on our door 10 minutes later. The public appeal was made the night before we left. We didn’t have the money to go. Brian’s parents were amazing angels and helped us out of a difficult situation.
We landed in London jetlagged but very excited as the first appointment at the Wellington Hospital was the very next day. Everything was set to go. Later on that week, we received a call from the doctor, telling us the anesthetist at the Royal National Hospital in Stanmore would not accept Nathan as a patient due to the severity of his heart condition. Mr. Taylor told us we needed to be transferred to one of his colleagues, at GREAT ORMOND STREET HOSPITAL.
Finally, the day came to have his plaster cast applied. I told Nathan he was so lucky as he was getting a real teenage mutant ninja turtle shell, most kids aren’t so lucky! He was so excited. All the doctors and nurses, even the anesthetist were chatting to him about his new “shell” he was about to get. He was so calm going into theatre. As the anesthetic went in, he went out with the biggest grin on his face. ( This was his 9th anesthetic)
I was called into recovery after an hour and a half. Nathan woke up and began crying. I asked him what was wrong and he said he wanted to watch a video in the toy room. We went straight back to the toy room where he played for hours with his little brother Callum (who’s two) He never saw a hospital bed after the procedure.
At the follow up appointment, the doctor who applied the POP jacket told me Nathan’s curve had gone from 55-60 degrees to 32 degrees. That was just mind blowing for us to hear. We went back to Australia with big grins on our faces. I was a little concerned on the plane ride home, as the pressure from the cast may have affected his heart with the changing pressures, but he was fine!
Nathan has had the “turtle shell” on for one month now. He loves it and refuses to take it off. Isn’t that handy considering he CAN’T!!! He can’t have baths, so instead, each night Nathan and Callum have luxurious foot spas while sitting back in mini recliners. I bring out hot towels and wipe them over as they eat treats and watch a DVD. They haven’t asked for a bath in a month! (Callum gets a shower when Nathan goes out with his dad) I have bought both boys complete ninja turtle outfits complete with weapon. They think they are the real deal and go around the house doing their little karate moves. It’s hilarious.
Nathan and I need to go back to London every three months for many years. The hardest part of it all will be leaving my little boy Callum who is two and my little girl Emma, who is only 4 months and of course my husband Brian. Still, it could be much much worse. The positive of it all is that Nathan and I will get to see some of the world, which we otherwise wouldn’t have done. I have also discovered that chocolate croissants exist in London and now I cannot live without them!
If I could say one thing about our experience with Nathan is to always be your own advocate and trust in your own instincts. This was the advice I received from Nathan’s cardiologist when I didn’t know which way to turn for Nathan. I decided to go with my gut feeling. As parent, we know what the best thing is for our children, so be confident in that intuition.
I’ve also learnt that no matter what life throws at you, you still deserve to be happy. I won’t allow any external circumstances to affect myself, my partner or my children. Attitude is everything and it can change your whole life. It has certainly changed Nathan’s.