Many of you will follow @mj_afc on twitter and some will have shared beer with him. Most will have marveled at how he is an Arsenal season ticket holder and away supporter whilst living in the North East. We have all taken our hats off to him for his commitment and admired the quality of his insight and his writing on Angel2Islington and on my sister site Gunners Town.
However virtually all of us will have been unaware that behind the scenes he is working, studying for a law degree and at the same time as bringing up 2 young children, with his wife Rachel, the youngest of whom, Nate is severely disabled with a very rare hereditary condition called Atr-x syndrome.
I will allow Michael to tell the story from but he running the Great North Run to raise money for taking care of Nate and the details ate at the end of the blog.
Nate was born via emergency c-section on 26th July 2010. Neither I nor my wife were expecting any surprises, and for the first few hrs of his life things seemed fairly routine. Then Nate was admitted to special care and within hours we were told that Nate may have a serious life limiting genetic condition.
I had left my wife and son in hospital for a couple of hours as we had promised our daughter that her brother would have presents for her. I shot to a nearby Toys R Us to get her some presents (mainly so she didn’t feel left out). During this time I was told that Nate had gone to special care, but it didn’t seem to be anything to worry about as they were just looking at his tone (Initially I thought this was his colour but they actually meant muscle strength).
Upon my return we were informed that the on-duty doctor needed to see us and we were shepherded onto a ward that had no patients and I started to realise all was not well. The news was broken to us, Nate was ill and they didn’t like his chances. Nate had presented three unusual characteristics; his ears were rotated more than expected, his eyes were too far apart and he couldn’t full extend his fingers, has wasn’t making any effort to do anything. Things were bad, very bad. They felt he had a serious genetic condition but the earliest we could see a geneticist was Tuesday (it was currently Saturday).
Meanwhile as the doctor was opening up to us ”had we noticed all of his unusual features?”, out of the corner of my eye I could see my parents making their way to see us, gifts and balloons in hand. Still to this day it breaks my heart to think that this moment of celebration was actually becoming more of a nightmare by the second. He didn’t cry/scream, he didn’t feed, in fact he didn’t do anything.
So we embarked on a 28 day stay in special care. Initially this involved a visit by the geneticist, who took quite invasive pictures of Nate’s unusual features. He didn’t (and still doesn’t) feel like an actual person to them, more a puzzle that frustrated them. A couple of days into his hospital stay I had to build myself up for my wife being told she needed to return home without our son. I hadn’t fared well in the first couple of days and my wife had to literally tell me to pull myself together. The heartache that caused was unbearable packing up her belongings, getting in the car and driving home. Where usually there would be family members, balloons and banners, there was nothing. It was as if you’d just come in from a day at work. Our family was separated, and it hurt. So we had a new routine. Nate was fed with expressed breast milk and overnight Nurses were trying all sorts of bottles and teats to try and get Nate to have some milk. I would rush to special care at 7am every morning and try and give him his milk, each and every day I hoped for the words “he’s demolished that bottle” or “his feeding has improved”, but they never came. It was a struggle and Nate would rarely take over 25ml, a pitiful amount. His sucking technique seemed flawed- he just didn’t have the strength to take a bottle. Nate was developing other issues- he needed oxygen. Meanwhile our 3 year old daughter needed our attention too. My wife and I started doing “shifts” to spend time with our daughter. I remember one day deciding I’d take her to the park so she could run around, thinking it would take my mind off things. After all, nice walks are supposed to help you relax. It didn’t work, her playing with other kids at the park made me think of her brother and what he would miss out on.
About one week into Nate’s life he had a visit from a respiratory doctor from the Great North Children’s hospital. He arrived just as we were going home for an hour or so. Hecast his professional eye over Nate and didn’t like his chances either. Based on what he saw, Nate didn’t have long to live. His drive to breathe was poor, so poor that if and when he grew the harder this would become. He advised us to tell our families to prepare for the worst. And so we did. So Nate is still days old and off we go to break this horrendous news. We did it in person. One of us waited in the car as the other entered the respective houses, if anything to minimise the heartbreak. What could anyone say?
|Nate with oxygen support
Nate began his journey to a diagnosis and had an MRI, ultrasounds, X rays, echo, blood, urine and chromosomal analysis, and seeing new health professionals such as a neurologist. I always hoped that one would give us some hope to cling to but it never happened. That said after a couple of weeks, home began to be mentioned. Obviously Nate couldn’t stay in special care forever, and the belief was that he wasn’t going to get any better. We had discussions about oxygen in the home and the local supplier was in touch. I didn’t know what to expect, then items like a concentrator and cylinders started arriving. It sounds daunting but it wasn’t anywhere near as bad as we thought. We had some hefty oxygen cylinders and lots of tubing to enable us to move Nate around. If we wanted to take him upstairs, he’d had to be detached from one cylinder and moved onto a portable cylinder as without oxygen he desaturated very quickly. It was a military operation. It was still a week or so before we took the leap in bringing him home but we had been hands on with Nate as much as possible. If a Nurse was doing something to look after Nate we wanted to know why and how we could do it. After all, these were our new parental tasks and if we didn’t know what to do then it was even more unlikely that we could take Nate home. I was focused on getting him home. That everything would be better once we got him home. We spent the best part of 12 hours per day in SCBU and even then I felt guilty for leaving each day.
We could see home was on the horizon and both my wife and I attended a meeting of about 10 NHS staff. We discussed Nate’s needs and who would be involved with our family. The main area of support was from the community nursing team, who would become very frequent visitors to our house as they helped expand our knowledge as parents and carers. Armed with oxygen, feeding equipment and an apnoea alarm Nate came home, I got to live the joyous feeling that leaving hospital brings. We could start our new lives.
The next big appointment was a sleep study at Newcastles’ Freeman hospital. The letter stated we’d go in, have the sleep study and find out the results within six weeks. Well within six hours of the sleep study we were transferred to the RVI’s Respiratory ward (where we stayed a long time). Nate’s carbon dioxide levels were through the roof. He basically had double the normal level of carbon dioxide in his body, which to you and I would mean we’d be out for the count, and he was stopping breathing a huge number of times every night dropping his sats very low. Nate needed a ventilator. More bad news. Then something magical happened, within two days Nate’s little face lit up. He smiled. At first, I was taken aback but then he did it again. Tears of happiness rolled down my face. Something had worked for Nate, this mask and machine had helped my son do the unexpected. However, Nate needed to tolerate the mask and ventilation for at least 5 hrs a night to get the benefits, and the drs were still experimenting to get the pressures to the optimum level for Nate so he had to stay on the respiratory ward.
|He likes a wriggle when he’s asleep
This huge high had taken our minds off everything momentarily but it wasn’t long before things went sour again. At this point my wife and I rotated hospital stays as if we worked in a car factory or something, two nights on, two nights off. An opportunity to sleep without the disruption of saturation/heart rate alarms going off was a temporary respite. I had managed to ensure I was at home on the 21st September 2010. It was the North London derby in the Carling Cup. I was going to unwind watching Arsenal play at White Hart Lane. A game that went to extra time that ended up in our favour. It brought me my old enjoyment of football, something I hadn’t felt for a while – football and I were becoming distant friends due to my hectic new life. As if to say my moment of happiness wasn’t allowed, in the middle of the night my wife called. When this happens you know something isn’t right and the conversation isn’t going to be pleasant. Rachel said “He stopped breathing, he had to be resuscitated after going blue”. What can you do or say? He had come around and appeared okay but that shouldn’t happen. This then became the battle. When I first witnessed it, it was awful. As I raised the alarm for support and nurses and doctors came streaming in I remember just leaning against the wall, sliding down and feeling completely and utterly powerless. I had no control. Nate at this point was as familiar with his ventilator as were we. It was these apnoea episodes that were stopping us from returning home. After each episode the doctors wanted a week of good nights before we could go home. We finally brought Nate home again after about 7/8 weeks in hospital, we even managed to take him to center parcs a few weeks later. We faced the upcoming prospect of Christmas secretly thinking, this could be his only one. We were advised to make the most of the ‘good times’ as they were something that nobody could take away from us.
Did the apnoea episodes stop and never return? Sadly not. He stopped breathing at home. I whisked him out of his cot and gave CPR. He came around pretty quickly and the paramedics were there in a flash. How much can one family take? Back to RVI we went. The constant feeling of one step forward two steps back would have been our slogan for the time. More difficult conversations awaited us, these now frequent apneas and resuscitation were going to impact on Nate’s brain and so we were advised the tracheotomy route needed to be considered. The thought of this device in Nate’s throat was unthinkable, it felt like he was slipping away from us. First the oxygen, then the ventilator and now this. I did however have a genuine feeling that this wasn’t the right thing to do. It had been noticed that the ventilation mask that covers Nate’s nose was riding up and it could be causing him to panic. His reaction might be then to shut down. We pushed for alternative masks and at the 11th hour suddenly there was a new one, and it fitted like a glove. A triangular silicon mask that offered enough room between his nose and upper lip. He started to sleep without the additional drama, with 2 parents on constant alert.
During our mammoth stay we met with the genetics team again. After negative results on an initial diagnosis. They wanted to try to pin the tail on the donkey once again. This time it required DNA being sent to the Netherlands as they had recently discovered a specific gene that could diagnosis a condition they felt would explain Nate. An 8 to 10 week wait beckoned and it was the beginning of October. A result was pending prior to Christmas. We actually had to probe for answers on a subsequent hospital stay and found a result had been received. It was again negative. You start to lose a lot of faith in the system when this occurs and I’d be lying if I said I had any faith in it at all.
2010 was nearly at a close, Christmas was successfully navigated and a great time was had by all but the uncertainty of Nate’s future always had the seed planted regarding would this be his last one. A thought that stills remains now. What happened next? Lots of ambulance rides, hospital stays and periods of recovery. Most of that winter was spent in hospital.
2011 though would be remembered for our return to Centre Parcs’ in Cumbria. This would now be our holiday of choice, as flying is an absolute no go in terms of risk and care. Staying in the UK is great but there is still the worry of being away from his drs who know and understand him, particularly without an underlying diagnosis. We’d again be 20/30 miles from the nearest hospital. So off we set with my parents in tow. As my wife co-ordinated the shopping and unpacking I took my 4 year old daughter to a mini-crossbows training session. It’s not as brutal as it sounds, honest. She enjoyed it and it just so happened there was a sports bar in the complex. It would have been rude not to have dropped in for a cheeky pint with my dad. As I sat down and took my first sip/gulp my Dad’s phone rang, it was for me. It was Rachel. Nate had deteriorated and she was having to turn up his oxygen on at an alarming rate. Whenever Nate requires more oxygen we have to get him seen. The rate in which he goes from happy to extremely ill can change within 30 minutes. Paramedics were called but would be about 30 minutes. I grabbed the car and waited at the exit to follow them. We were checked into A&E at Carlisle and we were greeted by extremely helpful nurses and a very obnoxious doctor. We asked him to liaise with the RVI regarding Nate’s history. He declined, saying he could deal with this himself. Something we were highly unimpressed with. Subsequently Nate desaturated and before you know it he was being resuscitated and the team from the RVI PICU were en route. Yes, specialists from Newcastle travelling in an ambulance to come to our son’s aid. For Nate’s safety he had to be intubated and essentially vacuum packed to ensure he had a safe journey. We followed them over the time being around 2:00am while Nate was hooked up and settled I pulled together some tables in the waiting room and formed a bed before passing out through exhaustion. Helpfully the nurses found us beds for a few hrs on an empty ward. The next day was huge, we’d been advised this (being fully ventilated) was a situation we may find ourselves in and that Nate’s body may decide that it didn’t have the drive to keep working and could become reliant on the machines. We waited. And waited. Loud music was played to get him to stir and the doctors took the decision on the 2nd day to remove the tubing and see how Nate responded. As parents you are utterly powerless. We hoped for the best. I don’t know what is contained within the lad but he has a drive that is beyond any level imaginable, particularly for one fighting his own body. We had to leave intensive care every night as they don’t have beds for parents (which is totally understandable). Meanwhile our daughter remained on holiday with my parents blissfully unaware of the drama. I had some of Thea’s things in my car that hadn’t been unpacked and drove to Scotch Corner to hand my Dad her things then return to Newcastle. Emotional scenes again. I’d say this was an emotional roller coaster but then that includes highs, and we didn’t have many. It felt like life was beating us into submission. How much can a family take? Ridiculously once Nate had awoken his return to normal (for him) was swift and we escaped on the Friday, literally hours before our daughter arrived home and still to this day, she has no idea what had happened.
|NG tube used to vent his stomach
Nate had dodged a bullet but things still weren’t easy. His difficulties drinking bottles were still on going, his consumption of air is quite a talent, filling his stomach and aggressively burping or worse still needing his stomach venting via his feeding tube. We needed this looking at and consultants were torn. Did this lad require a gastrostomy op just to deal with his stomach filling with air? The answer was yes. We needed to convince a few but we got there. So the op date was set for 31st January 2013. Nate got put under another GA and away he went for surgery. We were told the op would take approximately two hours. In the RVI there’s little to do it’s a case of either go to Costa or sit in his room and await the call. You combine the both, comfort eating whilst you realise that someone is performing surgery on your son. After about 45 minutes we were told that Nate is in recovery and we can see him. He needs his ventilator post op as he is weak and my wife and I get this hooked up ASAP and ensure he’s coping. However en route we realised that this op is over way ahead of time, something was up. His stomach wasn’t where it should have been, it was much higher than first thought. A waste of a GA and frustration on our part. How had nobody checked this and most important of all, when would we be able to come back. The answer was 5 months, this time he would face a much more invasive operation, entering via his belly button and not through his throat. His stomach would be pulled down and attached to the outer wall. All this for an already severely disabled child. Yet again, he passed with flying colours. He was naturally in pain but he exceeded his recovery time by two days and we only spent the weekend in hospital. It was now over to us to get used to his new equipment. Baring in mind Nate comes with oxygen, ventilator, saturation monitor, suction machine and now a feeding machine. We didn’t want Nate to lose the enjoyment of his bottle but over time it was the best decision that he takes as little as possible via his mouth.
This year, finally, we received a diagnosis for Nate of ATR-X syndrome. It explains all of his odd symptoms and health problems (too many to mention) but it’s still very rare and even the expert in this syndrome can’t tell us anything about the future.
I’ve written quite a bit and I’ve missed out many things- Nate successfully coming off oxygen during the day, the many ad-hoc hospital stays where he has been seriously ill, other ops, Nate starting school, issues with his legs and feet, the trials off his ventilator (albeit unsuccessfully) and his amazing sister that has held our family together.
This is the part now where you can (if at all possible) help. Nate would benefit from equipment we cannot afford.
So far we have used money from kind donations, and fundraising to purchase
Sensory Toys – £300
A p pod beanbag chair – £500
A trike – £1900
Projector and tent – £230
Playmats – £200
Specialist physio – £300 (every six months)
Special blender- £350
We are in the process of swapping rooms with Nate in our house. The time has come for him to command the biggest room in house, he has a through floor lift (local authority funded) and hoist tracking throughout the house. Nate is happy boy and we just want to give him every possible chance to eek out every drop of potential that he may have. At his end of year school meeting they discussed his ability to stand for 30 minutes in his stander and how we may want to consider training Nate to use a toilet. Two things that bring joy and happiness to us all, even just the mention of it.
We are looking to change Nate’s room into a full on bedroom/sensory room. Something he adores and interacts well with. So giant bubble towers with interact switches, fibre optic lights and musical melodies are the order of the day (for starters) and this can be Nate’s place.
So on the 13th September both myself and my friend Glenn Kent are running the Great North Run to raise as much money as possible to make this happen. Of course the more we raise the better as every penny counts. If you would like to donate then you can do so here http://www.gofundme.com/bwe6vc
Please support one of my best friends on here , a fellow Gooner and his family on the journey ahead NOW.