Sunday, September 27, 2015

September 27 - Dear Nicholas Sparks (Guest Blogger

Dear Mr. Sparks,

My name is Melanie Parsons and this is the story of our baby son Jak.

Everything seemed OK when I had my first scan, where they confirmed my due date as 1st August 2001. Apart from bad morning sickness, all seemed to be going well, but at 21 weeks I went for my second scan which detected a problem in the baby's chest. I had to go back 6 days later to have another scan with a specialist, who confirmed that our baby boy had a condition called Congenital Diaphragmatic Hernia. We had never heard of this, and didn't have a clue what it was. The doctor explained it to us and then said that I would be referred to St. Mary's Hospital in Manchester, the only hospital in the north west of England that can deal with CDH. My appointment was made for the next day, so off we went for yet another scan.

The doctor there explained everything that could be wrong with our little boy and advised me to have an amniocentesis to see if he had any chromosome defects. I had this done and went home to wait the two weeks that it takes for the results to be known, two weeks that seem like a lifetime when your unborn child's future is at stake. It was after 13 days when I received a message saying the test was ok, the baby had a normal chromosome count. So, happy again for a while, having overcome the first obstacle.

We decided to call our son Jak Thomas Roy, and some of my friends made fun of the way I spelt Jak. Thomas was a friend's little boy who is now an angel baby, and Roy is my late brother. A special name for a special little boy.

I had to keep going to St Mary's for regular scans and check-ups and we even met one of the surgeons who would operate on Jak after he was born. It made things easier when we were shown around the Neo-Natal Surgical Unit (NNSU) where Jak was going to be cared for after he was born.

The doctors decided to induce me a week early so that the medical team would be ready for Jak. So on the 24th July I went into hospital and the next morning went up to the delivery suite where my waters were broken. Then I was given a drip to start contractions. Each contraction caused Jak's heart rate to drop, so he had to have a test to see if he was getting distressed, but he wasn't. My friend Wendy, and Paul, Jak's daddy, arrived while I was having this done and came in to me after it was finished.

Jak Thomas was born at 12.38pm on 25th July 2001 weighing 6lb 2oz. I held him for a couple of seconds before he was taken to have medical attention. We heard him give out a little cry, which was a brilliant sound to hear, as at the time, we didn't realise that it could be many months before we would hear him again. He was taken to the NNSU and we were told we would be able to see him in about 30 minutes. Two hours later we were still waiting. The midwife came in and explained that Jak's right lung had collapsed and he had to have a chest drain put in, but we could now go and see our little boy.

The first thing we did when we saw him was to take some photographs of him. He was connected to lots of monitors. An oscillating ventilator was supplying him with nitric oxide, and he had the drain in his side. The nurse explained all that was going on with Jak and what each thing on him was for.

I think it was at this point that it really sunk in as to how serious his condition was. Even though the doctors had kept us fully informed from the moment he was diagnosed, I suppose like most parents, we assumed he would be one of those CDH babies who have their op within a few days and go home after two or three weeks. In any case, although his insides were all messed up, to us he looked like the most beautiful baby in the world.

The next night, one of Jak's nurses, Louise came to me on the maternity ward to explain that Jak's condition had worsened, and suggested that we consider having him baptised in case he didn't make it through the night. So it was panic stations as I contacted Paul, who came back to the hospital bringing Jak's two grandmothers. We chose to have Jak blessed, and at 12.30am the chaplain performed a short service. But Jak, being a little fighter, slightly improved.

The next day Jak was very poorly again, and one of his doctors said that the best option for Jak would be to transfer him to a hospital in Newcastle for ECMO. Jak had to come off the oscillator and onto a conventional ventilator before he could be transferred, but he only lasted an hour before his SATS all dropped, and he had to go back on the oscillator. So, no move to Newcastle.

On the Sunday after Jak was born (4 days old) the doctors told us yet again that he may not make it through the night. Again we all prepared ourselves to say goodbye to Jak, but once again he improved slightly.

Jak eventually came off the nitric and back on conventional ventilator. There was another little boy with CDH who was 4 days younger than Jak, but little Louis is now an angel baby and left us at 10 days old. We will never forget him.

We were told that because Jak was so poorly, they did not think having surgery to repair the hernia would help, as out of 250 babies as poorly as Jak, only one had ever got better, so the odds were stacked heavily against him.

However at 5 weeks old the doctors decided that surgery was worth a try after all, so they could say in their hearts they had tried everything possible for Jak. He had his operation on 30th August. It was carried out by Mr Adrian Bianchi, the surgeon who separated Siamese twins Gracie and Rosie Attard, from the Mediterranean island of Gozo, in November 2000, an operation that received worldwide media coverage at the time, due to it being one of the most emotive cases in medical history. It was reassuring to know that Jak was under the care of such a world-renowned surgeon. We were told Jak should be ok through the op, but moving him to theatre would be the difficult part, as they would probably need to keep stopping on the way to let him stabilise. When they wheeled Jak off the ward to go for his op, it was one of the worst moments of my life.

The operation lasted 3 hours, and immediately afterwards, Mr Bianchi, still in theatre gowns, came to us and explained that the hernia in his diaphragm was very large and they'd had to graft some muscle from under his left arm to mend it. He joked that Jak and he were fine during the op, but they'd given his anaesthetist a few scares between them. As he said this, the anaesthetist, standing beside him, pretended to wipe the sweat from his brow. We knew from their reactions that the operation had been a success.

After the operation Jak was put on a course of steroids to help boost his lungs. He improved with all this and the next step was to take him off his paralysing drug, which at first he didn't tolerate, but they left him a while and tried again. The second time he came off and it was brilliant to see him moving about.

We had good days as well as bad ones. He was still on morphine and got down to 0.3 but had a bad reaction when it was turned lower. So they left him on it for a while longer. In the meantime Jak decided one night at 2.45am when all was quiet on the ward, to pull his ventilator tube out which knocked his progress back a bit. A new vent was put in and Jak seemed to be improving. They made a more diluted morphine so they could wean him off it more slowly, and this time Jak finally got off his morphine.

After his op he was not gaining weight so he had to go on special baby milk called infratini, which he did not like as it gave him bad colic. So they changed it to something else, as he needed high calorie food so he could put weight on. He now weighed 8lb 6oz which was good for Jak as he at one point went down to 6lb 4oz, just 2oz heavier than birth weight.

Jak gave me a big smile when he was 13 weeks old when I told him off for keeping on grabbing at his ventilator. As I kept moving his hands away, Jak must have thought it was a game as he started to smile. Another milestone for Jak. Jak was still on his ventilator and still making very slow progress when he decided he'd had enough of his vent and pulled it out again, so it was panic stations yet again.

Jak was put onto normal baby milk which seemed to agree with him better than the high calorie milk. He still suffered with colic, just not as bad, and still had to have Infacol colic drops.

Still on steroids, Jak had a very good Christmas. The week before Christmas the

Family Circle (a support group for families with babies in special care, run by parents who have been through the same) visited with Santa. Jak knew something different was going on and fought to stay awake, then fell asleep as soon as he had his picture taken with Santa. On Christmas day, his daddy and grandparents and I went to the hospital to see Jak. We had lots of presents for him. Again he was aware that something was going on and was overwhelmed with all his new toys and teddies.

Jak was now five months old, learning new things all the time. Even though he could not make a sound he would sing along to his nursery rhyme tapes with one of his favourite nurses Ian, who also taught Jak to blow raspberries. Another nurse Caroline was teaching him naughty things such as pulling hair.

Jak loved music and noise and would dance to his musical toys which sometimes set off the alarm on his SATS monitor. Another of Jak's mischievous tricks was, if he was not getting all the attention that he thought he should, to pull down the headband that held his ventilator in place. Jak did this lots of times and would laugh when he did it. One time he watched his nurse Tony walk away from his cot, waited until Tony had his back to him and pulled the headband over his eyes. When Tony was putting it back to the correct position Jak was giggling and kicking his legs about; he saw this as a funny game.

Jak had been on the steroids for a long time and could not stay on them any longer, as long term use could cause problems elsewhere. So he had to come off them after doing so well on them. He had improved so much his vent came down to a rate of 3.5 per minute. The doctors were very pleased with how much Jak had improved and things were looking positive. They explained that the next step was to have a tracheotomy, then be moved to another hospital, as he was getting too big for the ward at St. Mary's. We didn't want him to leave the brilliant nurses and doctors but it was what was best for Jak.

Unfortunately, before the move or the tracheotomy could happen, Jak began to deteriorate, which came as a shock after all the progress he had been making. He was started on a course of inhaled steroids, but did not cope well with these. The doctors got us in for an update on Jak and explained that they did not think he would get well enough to come off his vent, that his lungs could not support his body as they were too small and under-developed. We asked lots of questions such as could a lung transplant be done, but Jak was too poorly for this.

On the 23rd of January I stayed overnight at the hospital with Jak, and the next morning one of the nurses woke me at 6am to tell me he was very poorly. His daddy came in to the hospital and we spent some time alone with Jak. As he lay in his cot, he looked up at us and his eyes seemed to be telling us that he'd had enough, that he couldn't fight anymore.

We got his grandparents in and at 10-30 am in his daddy's arms and mine, Jak fell asleep for the last time. He did not suffer or gasp for breath, he just went to sleep and his hard long fight was over.

The nurses and doctors at the hospital have been brilliant throughout and remain to be there for us. Six nurses came to Jak's funeral. It was a special day for a special little boy. We played Eternity by Robbie Williams, as this had become known as Jak's song, because it was number one in the music charts when he was born.

One thing that I have noticed about having a poorly baby is who my real friends are. Some had never even bothered to go and see him and if I had £1 for everyone who said they'd get Jak a present when he came out of hospital, I'd be a very rich person. He has been treated differently from babies that are lucky enough to be born in perfect health.

The day before Jak's first birthday, we had a memorial service in the hospital chapel, as a lot of the nurses wanted to say goodbye to Jak but could not come to his funeral. Jak will always be our special little boy who will remain in our hearts forever and everyone that met him will remember his big brown eyes and long eyelashes, plus his gigantic smile that could melt the heart and seemed to light up the room. We'll always love our little spud Jak Thomas.

We have since had another little boy, born on the 27th July, 2 years and 2 days after Jak was born, who we have called Ben Jak Thomas. We chose to give him Jak's names as his middle names in memory of his big brother. The pregnancy and birth were problem-free, but that did not stop the worry and concern. We were given the option of going back to the same hospital where Jak was born but we chose to go to our local hospital.

Even though we were told that everything was fine with this baby, we could not help but worry in case they had missed something and fate would repeat itself. At the back of my mind I thought that something would go wrong. It was only after the doctor had checked Ben over that I was happy that he was fine. Ben is now a happy, healthy 2 year old and has no problems at all, which we are very grateful for.

We have told Ben all about Jak even though he is too young to understand properly. When we ask him who Jak is he replies "Jak is Ben's big bruvver". When he is old enough to understand properly we will explain all about Jak and why he is an angel baby. Also we have memory boxes for both Jak and Ben which contain everything from birth congratulation cards and name bands from the hospital, to Jak's sympathy cards and Ben's birthday cards, which Ben will be given when he's old enough to look after them and understand what they are.

I hope Jak's story has not been too long and that you have enjoyed reading it as much as I have writing it, even though it has been hard to sit and remember everything without getting upset. That is why it has taken three and half years since Jak died to finally finish it.

Written by Jak's mom, Melanie Parsons (Great Britain)

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