My Special Needs Baby

Local Mum Rachel tells the brave and moving story of how her life has changed since the birth of her special needs son.

45 days. That’s how long J remained in the special care baby unit at St Helier’s Hospital. For the first five days I remained in hospital too, so sleep deprived as we all are as new mums, just wanting my own bed. 

The feeling of going home without J was so tough.  Three visits a day over 45 days = 135 visits to special care. During which time I would feed him via tube since he was unable to latch on to me. I tried every single visit to help him latch on but it just was not happening. I remember a midwife trying to physically stuff my boob into his mouth whilst another looked on with some kind of horror on her face.  

It was not conducive to aiding me and in reality all rather stressful in what was already a ridiculously stressful time. So I expressed milk, 4 hourly, for 6 months in the end. I am still proud that I did that for him. It felt like the least I could do to help him under the circumstances.

 J came home with the feeding tube still in place. A nasal gastric tube (ng). We had many days in the coming months where he would pull that feeding tube out and we would have to pass a new one through his nose and down into his tummy. Fed his milk overnight for 10 hours with a pump machine slowly giving him his milk. 

So to explain, he never latched on, he can drink from a bottle but has never really taken to it. I know it is incomprehensible to many people, that your child does not take a bottle. You just wouldn’t imagine it unless you have seen it or gone through the same. It can be a very lonely club to be in. Sometimes I have felt like just holding up a piece of card explaining what the tube is for. One lady thought it was an oxygen tube to help him breath. 

Totally understandable to not know but it does get tiring having people staring and being overtly sympathetic to the point of complete strangers crying in shops. Yes, that has happened to me on more than one occasion. People telling me they can’t cope with it. Well, lucky it’s not their child then really isn’t it.

BUT, like everything else, you get used to your own kind of normal and you come to accept it all. However,  I did struggle for months and months accepting this part of J’s problems. We held on to the fact that he had a very weak heart and was too tired most of the time to feed; so figured that once he had his heart operation he would pick up his bottle feeding and all would be fine.  

Unfortunately it became apparent post recovery from heart surgery (just over a year ago now) that his feeding problems would remain. It took me nearly a year to accept the feeding tube is part of our daily lives and to stop trying to live in the future of ‘he won’t need it in a couple of months’.  

In August of this year J had an operation to fit a gastrostomy mini button. So it is directly fitted to his stomach. On the outside it looks like the rubber stopper to an inflatable ball. In December of last year (three days before Christmas) we finally got the diagnosis of CHARGE Syndrome. I will explain this more in maybe the next blog. It’s quite complex and a very broad spectrum. The feeding issues are very common with CHARGE (I am not shouting by the way, CHARGE is an acronym and you will find it written this way). 

Most children resolve their feeding issues by the age of 5. I am hoping J might master it a bit sooner. He does at least have a safe swallow (which some children can have very real problems with); and he does eat three pureed meals a day, so we are making progress and are luckier than some.  His milk is still fed overnight for ten hours and the gastrostomy is far more discreet and easier to manage.

Anyway, I wanted to talk more about the special care unit experience and I have gone off on a tangent. Do excuse, I often do that and will most likely continue to do so! J was pretty big when he was born at 5lbs,13oz for seven weeks early. I have lost count of the times eyebrows were raised and murmurs of ‘oh he would have been very big if you’d gone to term’ that I heard along the way and even now still do when recounting the early days. 

J was certainly a lot bigger than many of the babies that we saw in there. I admire so much the staff that work there. Such an emotional and difficult job much of the time, yet most of them offer you so much support, comfort and encouragement. Without their help I have no doubt that I would have crumbled in a heap on many occasions. I have nothing but absolute respect for them all.

During our time there, I saw many babies come in and go home within a few days. All parents sneaking a passing peak at the babies in their little cribs. You can’t help but look and I found myself talking to some mums some of the time and respecting people’s privacy at other times. 

There were so many nights I left there to come home feeling so desperately sad that I couldn’t hold my baby for longer and curl up with him. How unfair that this was happening to my baby. Life did really become groundhog day in those weeks. My partner had to go back to work after a couple of weeks which was really hard (to be then be made redundant a little while later which actually ended up being perfectly timed for what we were having to deal with).

J came home two days before his due date. We ‘roomed in’ for two nights before that to learn how to give all his medicine (reflux meds and vitamins) and were given instruction on resuscitation and basic first aid. All the boxes were ticked. The only one that remained unticked was J being able to feed from a bottle.

It got to the point five weeks in where I said desperately to one of the drs “when is he coming home, why is he still here? We don’t care about the ng tube, we can deal with it” The response was “we needed to hear you say that, he can come home next week”.  

The final hurdle to pass was to have a multi agency meeting with the professionals accumulated along the way. I’m not sure I remember everyone that was there but know there was the health visitor, dietician, dr, midwife and an early years keyworker. 

This was the first time for us meeting the keyworker, we learned that she is the one that kind of brings everyone else together and has helped us since in many ways that you just would not think you would need help with when you are waiting to take your baby home. 

Words that rang in my head from that meeting from her was ‘there are things that you will need and are entitled to, like disability allowance’. I remember inwardly balking at that, thinking J wasn’t disabled and why on earth would be entitled to something like that. 

The meeting went well, and so we went back to special care to finally pack everything up to bring J home when we hit with a final blow. He failed his newborn hearing test. The midwife told us not to worry, that her child refused to speak for the first four years  and it was probably nothing to worry about. Tears flowed, disbelief and then I just tried to hold onto her words that it would be okay and must just be clogged up ears.

I cried and cried when J was strapped up in the car seat and we said our goodbyes. It was like leaving our second family in some ways but so relieved that we were finally bringing him home and counting our blessings, which I still do on a daily basis. 

 (U.S. Foundation)

Entry One
On the 30th May 2010 my life changed forever. I gave birth to my son J. He arrived seven weeks early and I had only been on maternity leave for two weeks. My hospital bag was half packed. I was home alone when my waters broke, partner at work up in town and neighbours out. 

Luckily a friend who lives nearby came to my rescue and ran around like a loon trying to find all the other bits for my bag with me in a state of complete shock waiting for the ambulance to arrive. She was brilliant I have to say. 

And so started the longest few weeks of my life. J was born nine hours later and wasn’t breathing. The cord had been wrapped around his neck and two midwives had to pull him out with quite some force as his shoulder got stuck. I got second degree tears and he had to be resuscitated. 

The notes say it took 4 minutes, but my mum and partner think it was more like 2. Having watched ‘One Born Every Minute’ somewhat obsessively in the weeks leading up to the birth, I wasn’t worried that he didn’t cry immediately. I was lucky I couldn’t see what everyone else around me could see. He was very blue. 

My partner went down to special care with J whilst I was stitched up. I felt pretty euphoric that I had given birth having been completely fearful pretty much all my life. Hence here I was aged 39, finally a mum after a somewhat difficult few years of trying with two previous miscarriages. 

We were told almost immediately that J had a very loud heart murmur and he would need to go to the Royal Brompton Hospital in Chelsea for proper heart scans as they didn’t have the right specialist equipment at St Helier's. Being a bank holiday weekend and J being born in the early hours of Sunday, this meant we had to wait until the following Wednesday for this to happen. In the meantime we felt overwhelmed with happiness and fear at the same time. 

After two days I was moved to a private room after having endured being on the labour ward sharing a room with women who were either being induced or in the early stages of labour. Not ideal to put it mildly.  The Dr in SCBU was in fact very angry on my behalf and marched over to the ward and insisted I was moved. A room was found immediately after the same midwife previously insisting there were no private rooms available. 

D-day arrived and off J went to the Brompton in an incubator with two nurses.  I was in such a bad state physically, I couldn’t manage the journey and my partner stayed with me so we could support each other. 

After a very long few hours we were taken into a room (we later referred to this as the ‘Room of Doom’) by a Dr and told the devastating news that J has congenital heart disease called Tetralogy of Fallot. I still remember being told like it was yesterday. 

My head was screaming this can’t be happening, this can’t be happening, not after everything we’ve been through! She drew a diagram of the heart to explain that there were two holes between the upper and lower chambers and that his pulmonary artery and valve were too narrow. He also has a right aortic arch with unusual branching. 

The only words that came out of my mouth were “Is he going to die? “ No was the answer; but he would need open heart surgery within the first year in order to survive.  I relaxed a bit and thought to myself, Okay, I can cope with this. He’s not going to die. It will be fine. 

We were told Tetralogy of Fallot is the most common form of heart disease and the most treatable. It is as common as cancer but not as widely reported. Certainly, we had never heard of it before. 

In the coming days as we found out more about it we kept asking ourselves why? Why our son? We felt very angry and went over and over it in conversation.  Statistically a 1 in 10,000 chance of Tetralogy of Fallot.  It is very commonly picked up on the 20 week scan. This wasn’t the case for me. 

In fact we had no indications of anything being wrong at all. I will never ever trust a scan again. It would not have made any difference to me apart from probably causing me hideous anxiety for the rest of my pregnancy. As it was I was in high stress mode having to commute on the tube into work every day and dealing with spd problems. That in itself was enough at the time. 

In the days following this news the Dr’s started to request various tests for syndromes associated with TOF as I will now refer to it. 

J was tested for Downs, Di George and Noonan’s Syndrome. With the latter we had to sign a consent form agreeing to chromosome testing. On the form there was a list of ‘unusual features’ justifying the request. J was being looked at in a critical manner we felt, from day one.  All we saw was our beautiful amazing little baby. 

We had only ever heard of Downs and me being me had to go Google mad. I am in the school of thought that knowledge is power and I don’t bury my head in the sand. My partner prefers the latter to a certain extent and didn’t want to know what I’d read. 

At this point though I was still in hospital and could only do this on my phone with limited success.  He was at home and to this day, I don’t know how much he googled at that time.   All I know is that we held each other so close at one point, so fearful for our future as a family.  

So this is where I will leave this first entry about my life as it now is with my beautiful boy who has special needs. There is a lot more to tell and in part my reasons for doing this is for other families out there that may be going through similar things. 

So little on the Internet I found when googling in my darkest hours! x

rach jes-1.jpg

Rachel and J


British Heart Foundation:   

Royal Brompton Hospital:   

Heartline (support for families):

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