Help Axel Crossley-Coe

My name is Kayla Crossley.

I am a twenty year old Mother of twins, Kyan and Axel. Like many other teenagers, I thought the whole pregnancy thing would never happen to me, but, unsuprisingly, it did.

At 16 years old, I fell ill. Diagnosed with swine flu and hyperthyroidism, I was taking various amounts of antibiotics, having multiple xrays, and was continuously admitted into hospital. I was referred to see a heart doctor in a nearby town, to see if I had any abnormalities to answer for the raised levels in my blood.

I can remember that day like it was yesterday. I was lying on the bed, my Mum, Jody holding my hand, and all of a sudden she had jumped up, staring at the screen and repeatedly asking "What the hell is that!" She had seen the top of the head of a relatively well formed baby. As he was looking up through my abdomen, he had knicked my expanding uterus. How did I not know? I was 16. I had lost 10kgs from being sick. My "spotting" I had classed as being my period. I didnt know the difference!

The next day, I was accompanied by my Mum, brother and family friend to my first scan. Straight away, it was obvious there were TWO in there; I was 21 weeks pregnant! But also, something was wrong.

Axel was half the size of his twin.

I was referred to the Whangarei Hospital Fetal Medicine Clinic. They did a scan, and instantly I was referred to Auckland Hospital's High Dependancy Fetal Medicine Clinic. We travelled down, Mum and I, continuously for two weeks. Then, I was in agony. Fearing I was going into pre-term labour at 23 weeks, I was admitted into hospital for two days. Thankfully, it was a kidney infection. That changed everything. I was starting to show, and being an hour away from any proper medical help wasnt the wisest. So I moved to Auckland to stay with my Grandma and Aunty. For the next two months, I was having twice weekly ultrasounds, checking the boys were still growing. At around 27 weeks, we were given a diagnosis. Twin To Twin Transfusion Syndrome. Axel was given a less than 5% chance of survival, and Kyan's would be greater, if I chose to 'abort' Axel. I decided against it. At 30 weeks, I was admitted onto the ward, as Axels doplar, the blood that circulates through his body, was reversing. His blood was being sucked out of his body, and put into his twin. I was at risk of losing the two things that I had grown so accustomed to. On Monday December 6th 2010, I was told I was to have an emergency caeserean, but there were no beds available for my sons. There was only one other hospital in the country, Christchurch, that was available and equipped to have them. Thankfully, in the last minute, Middlemore Hospital had phoned and let them know they were able to take the twins. Relief! So at 3:43pm, with Mum clutching my hand, and around 13 other people hovering around me, Kyan was born. I was allowed a seconds peek before he was whisked away. At 3:45pm, Axel was born. But I wasnt allowed to see him. I just saw a tiny body wrapped into glad wrap.

Through the next week, my mind was exhausted. My sons were alive! Kyan was 1492g (3lb 2oz) and 41cm long. Axel was 560g (1lb2oz) and 30 cm long. Both boys were on CPAP, a type of breathing aide, but, THEY WERE ALIVE! For the next week, everything seemed okay. Apart from the constant blood taken, and doctors prodding, both boys were off breathing aide, and were taken into SCBU, a lower risk unit for babies. Thats when I heard about the honeymoon period. For the last three weeks of pregnancy, I had had weekly steroid injections to strengthen the boys lungs. Axel crashed one night. A nurse had forgotten to check the temperature of his incubator, and he was taken back to NICU. As I arrived the next morning, I found my tiny boy covered in tubes. Words were being thrown at me that I had never heard of. Axel had three blood transfusions, stayed on CPAP, and had a lumber puncture to rule out meningitis. They couldnt figure out what was wrong. He slowly started recovering, and began light treatment for jaundice. Axel at that stage had problems coming out of his ears. His gut wasnt properly formed, his genitals werent properly formed, and they doubted he would ever function like a "normal" child. After two months, the boys were transferred to Whangarei Hospital. Kyan was allowed to come home. But not Axel. He had developed Hyperbilirubinaemia, recurring jaundice, he wasnt able to suck properly, and depended on oxygen to keep him breathing. At four months old, he had his first surgery to correct bilateral inguenal hernias. Finally, he was allowed home at 5 1/2 months old. We moved in with my Mum, Dad, and two brothers. Things were good. Axel was fussy, but that was normal for most kids, right? Kyan was thriving and hitting every milestone at a perfect age. Thats when we started noticing Axel was behind. Kyan was pulling himself up onto things. Axel had just learnt to sit by himself. After constant pediatrician, dietician, and neurodevelopment intervention, he finally took his first steps at 19 months old. He was slowly gaining weight, but never getting onto the graph, while Kyan was soaring on the 50th percentile. At a year old, he underwent his first surgery to repair his hypospadius (under developed penis), and had an orchiopexy (testicle was lowered and stitched). He had two more surgeries, one for hypospadius, and the other for another hypospadius operation and a second orchiopexy. At nearly three years old, the boys had grommets put into their ears, and they constantly had ear infections. In February this year (2014), my Mum phoned me regarding another lady she had been speaking to, who also had twins, that were in a similar situation to us, and the words Russel-Silver Syndrome were brought up. RSS is a type of dwarfism, that affects not only bone structure, but also appetites, facial appearances, and had many similar symptoms as to what Axel had. I took the new findings to the local GPs, and with the nod, took it further to our pediatrician. Sadly, the first of two tests came back negative. But that was the least of our problems. Axel was dropping weight and was barely eating anything orally. He was admitted into hospital for 11 days, with doctors conducting tests and watching his eating patterns. He was diagnosed with having Ketotic Hypoglycemia, and was placed on a feeding tube, through his nose. That was in August. Since then, Axel hasnt gained any weight. He is now being fitted, also, with a headband that sends frequencies to his ears, as he is struggling to hear and speak clearly. Along with this, Axel has ANOTHER surgery coming up for a fourth hypospadius repair, and to have a gastroscopy, as there are suspicions he has delayed gastric emptying.

Thing is, we don't have a car. In 2013, I had a car accident. I suffered a brain injury, and broke my scapula in three places. The car was a complete write off. I then got another car, months after my accident, but it was a complete bust. It stopped running.

For the last few months, I have had to borrow cars to get my children to and from hospitals for appointments. We have been to Auckland Hospital twice this year, with two more appointments due in December. I have had dozens of appointments to Whangarei, and to Kawakawa, and visited the GP 57 times since December last year. We need help. I am a solo mum, on a benefit, and I really need to get my sons a car for transportation, for Axels health.

Then there's the next thing.

Axel doesnt qualify for growth hormones to be subsidised for him. He is too tall. He needs to be under 3 standard deviations from his parental growth, and he is only 1.93SD, which has been estimated between 3mm and 5cm. Growth hormone in New Zealand costs around 10,000 dollars a year. But the benefits are incredible. He will develop an appetite, and grow to the size of a normal adult! His bones will strengthen, and his organs will develop much easier.

But I cant do it alone.

Please, please help us spread the word.

If its 5 cents. If its 5 dollars, every cent counts!

Kyan is now 15.5kg, and 103cm tall. He is a blonde haired, blue eyed, ball of energy. He loves police cars, and pretending to be playing with dinosaurs.

Axel is now 11.3kg, and 90cm tall. He is the miniature version of his brother, but much more boisterous. His attitude makes up for his lack of height! He loves the colour red, and his favourite show is PAW PATROL on Nickelodeon.

Please note that if Axel is for some reason denied the chance to have private growth hormone, then the remaining money will be spent on therapy for his developmental delays etc. Plus there will be a fight if they dare not give it to him :D

That was quite a novel to read!

Thank you,

Kayla X