This was my first pregnancy and my partner Shane and I were very excited to be having a child. After standing out the front of the x-ray clinic for about 30 minutes flipping a coin to decide whether to find out what we were going to have. The ultrasound came back to tell us we were going to be blessed with a beautiful little boy.
We didn’t have to think about his name because Shane had had a dream a few weeks before we found out we were pregnant that we had a boy and his name was Josiah … and was meant to be.
Everything to us seemed to be going well, the morning sickness, the mood swings, the whole pregnant thing. But little did we know what we were going to face when our precious boy was born …
On the 9th of June 2008 I felt my waters break at about 4.30 a.m. I jumped in the shower and called out to Shane – he got on the phone to the midwives at Logan hospital and we got in an ambulance and went straight there. All was going well, the pain was ok at first, I had a major period of nothing but when I jumped in the shower the pains were back and the gas was doing nothing for me. So the midwife gave me a shot of pethidine. It was like I had been drinking for a week straight but it still nothing for the pain. By about 3.00 p.m. the pain was unbearable the midwife told me a shower might help, so Shane helped me into the shower and as soon as the warm water hit my back I fell to the floor and I starting having massive contractions.
The next thing I knew is I was back on the bed and being told to push. I tried but I couldn’t, my little boy went into distress. The room went from like 2 midwives, Shane and my Mum to like 7-8 people; I didn’t know what was going on. Josiah had to get a vacuum extraction because he was not at all well and I couldn’t push. He wasn’t breathing at birth and was whisked away, revived and ventilated. Josiah was born at 3.42 p.m. weighing 2250 grams (5 pound 10) and 47.9cm long.
One of the first people I spoke to after Josiah was born was my dad; I had to tell him he was now a proud grandfather. See dad lives in Cairns, so unfortunately he couldn’t be here. He was so happy and excited but was very concerned and worried about what was going on with his first grandchild and wanted to come to Brisbane as soon as possible but I told him to wait and see what was going on. I then spoke to my grandparents, Josiah is their first great grandchild and they were beside themselves – my poppy was so happy he was in tears as I spoke to him. He hasn’t been to well over the last few months and this certainly bought him a great deal of joy and pride.
The first time I really saw Josiah was in photo Shane and mum had bought in for me. I just cried. He was the most precious boy I have ever laid eyes on. We can’t begin to describe how we were feeling, there are just no words. All we wanted to do was hold him. And let him know that we loved him with all our hearts and everything was going to be OK. That he was going to be just fine. I couldn’t even begin to describe how Shane was feeling, after all he was with me every step and was there to see our son be born, it must have been just as much of a nightmare for him as it was for me. It was all just so surreal.
When you fall pregnant you don’t think or believe something like this could happen to you. In fact it’s the last thing that ever crosses your mind. I mean I thought about the ‘what ifs’ but was quick to dismiss them, I thought I was being silly.
Josiah got transferred to the Mater Mother’s Hospital about 4 hours later and was admitted to the ICN (intensive care nursery). Shane and I were then told that we would have to stay at Logan Hospital while our boy was at the Mater Hospital. We could’t bear the thought of it and Shane and I begged to be transferred to the Mater Mothers, after all I hadn’t really had the chance to see our boy. We couldn’t leave our boy. A good 2-3 hours ticked by and finally we got transferred at about 9-10pm. Shane came with me in the ambo, Shane’s step mum had to drive my mum in her car and Shane’s sister took her mums car.
We got to the mater and was told I would be sharing a room with 2 other mums that had their beautiful babies with them, we just thought could it get any worse … Shane spoke to the midwives and got them to put us in a private room. At least now we felt a little better with some privacy to try and comprehend what was going on. All we wanted to do was to see our precious boy. We couldn’t even do that, we had to wait to be formally admitted to the hospital and ward. At about 1 a.m. on the 10th June 2008 almost 10 hours later we were finally aloud to go down to the ICN and see our beautiful boy. We were able to hold his hand for the first time and stroke his little head. We were so overwhelmed; it was the most intense moment of our life. We were overjoyed but at the same time sadness filled our hearts and we felt so worthless because there was nothing we could do to help him. We cried many tears that night. But Shane was by my side, he was my rock I would have been a real mess if he hadn’t been there. Also the support from my dad kept me hanging on. Dad always knew to keep me level headed. Even when there were times in my life as a teen were he wouldn’t have thought so.
Later that day I was able to have my first hold, mind you he was on a matt and hooked up to all sorts of machines and that too was the best time of my life, I was finally able to hold Josiah and feel like a mum. I loved it and didn’t want to let him go.
No one could tell us what was wrong with Josiah the doctors had no idea at that time what was going on all they could tell us is that he wasn’t well.
I was admitted in hospital for 6 days, Shane didn’t leave either he was right there with me. We spent most of our time in the ICN sitting next to our special little boy, just talking to him and wanting him to know we weren’t going anywhere. I missed most my ob’s because I wasn’t in the ward.
When I was asleep at night Shane would go down and sit with Josiah for hours and then in the early morning about 5 a.m. he would bring me in a coffee. And we would both go down to see our boy. The first 2-3 days I couldn’t sleep, so the nurses gave me a sedative so I would get at least some rest. I kept getting into trouble from the nurses both in the ward and in the ICN unit for not resting. My excuse was I couldn’t stand being up in the ward with my little man 2 floors away.
When it was time for Shane and I to leave the hospital I was an absolute mess I couldn’t bear going home, I didn’t know how I was going to handle it, and as we don’t have a car it was going to be difficult to get up to the hospital every day. We spoke to a social worker and she had said there was nothing she could do. She didn’t seem to be at all compassionate about our situation. So we asked to be referred to a different social worker.
The next social worker was great, she had arranged for both Shane and I to stay at the Ronald House a street away from the hospital for two nights. We only stayed the one night, I thought that if I wanted to be else where than the hospital it would be at home with my dogs. She also arranged for us to be picked a couple of days a week by the Mater Hospital volunteer patient pick up team. It was such a big help. I’m so grateful for that service and especially to the volunteers that take time out of their day to day lives to provide such a service. Each and every one of them are such wonderful caring people. Volunteers all over deserve to be recognized and awarded for their time and effort that they offer. It takes a very unique bunch of people to be so willing to offer what they do.
I think all of us have that compassion to help others when in need of any sort help but a lot of us a just too afraid these days, or have the excuses ‘We simply don’t have the time’. Or we walk on by and just let them be. Just one time stop ask if they need help and I guarentee you the person you are trying to help will be most grateful. Shane and I should know, we are forever grateful for the help and support we have received not only from the volunteers, family and friends but from everyone who knows what is going on.
The night before we had to leave Shane and I were sitting out the front of the hospital and we noticed parents that had a baby in the same ICN room as us. They had been discharged and came up to the hospital everyday. I had to pull them aside and ask them how they did it, going home every night. Their strength and advice to have faith and believe was such a big help. After that chat we became good friends. There was also another couple we talked to heaps again in the same room, their little girl was right next to Josiah. We all seemed to be the longest ones in that ICN room and we all became very good friends. We were all going through such a similar situation it was good to talk to other parents who knew what it was like.
We think all the parents in ICN became a small community, a shoulder for each other on good days and bad. We met a lot of parents in ICN and if it weren’t for talking to them we don’t know how we would have gone. They gave us a strength that we didn’t realise we had. We think we gave each other strength, hope and encouragement. And for that I’m forever grateful them. And will remember them always.
We didn’t spend much time at home, we got up early in the morning and were at the hospital by about 6 a.m. unless we got picked up by the hospital and we didn’t leave the hospital until earlier hours of the morning. Sometimes we didn’t leave at all. We got into trouble by the nurses once again for not getting enough rest.
The ICN manager noticed that we hadn’t slept and hadn’t eaten for a day or so and told us we had to get some rest so she set up a room for us to get some shut eye and bought us in a meal. It was the nicest thing to do for us. She is absolutely wonderful. She went above and beyond in her role, and was always available for us to talk to. She was just unreal.
Josiah was ventilated for 7 days and about 2 hours after we left to go home, he was taken off and was breathing on his own, he had a lot of difficulty and was put on CPAP a machine that keeps a certain amount of pressure in his lungs and airway making easier for him to breath on his own. He was on CPAP for about 40 days. He had time off at strict intervals and gradually increased time off to see how he would cope. Because Josiah can not swallow he has a transpyloric feeding tube. It’s a tube that goes up his nose, down his throat, through his stomach and stops on the inside of his bowels. Josiah originally had a nasal-gastric feeding tube, which sits in his stomach, but because he was aspirating his feeds he got very sick and he had small amounts of fluid on the lungs, that’s why the doctors changed it to a transpyloric.
During this time we had meetings with doctors, our first meeting was with a doctor both Shane and I really didn’t get along with, during that meeting, we were told that they weren’t quite sure what Josiah had wrong with him, all they knew that Josiah wasn’t acting like a ‘normal baby’. He had little to no movement, couldn’t swallow so he had to be sucked out all the time or the saliva would build up and cut off his airway, he also didn’t have the strength to let out a crying sound. He cried but just with no sound. The outlook didn’t look good for Josiah. All they knew it was something to do with his muscle tone. The doctors didn’t have anything solid to tell us except it was touch and go and the chances didn’t look good and he would be in hospital for a very long time.
Josiah had a range of tests done from CT scans to MRI’s and a muscle biopsy. All the tests were coming back fine until the results of the muscle biopsy showed he had a server muscle defect, He was then diagnosed with a Centronuclear Myopathy more specifically a very rare condition called Myotubular Myopathy X-Linked (MTMX).
Myotubular Myopathy X-Linked is a rare inherited condition. A muscle condition, manifesting itself as an abnormality in the cell structure (genes) of muscles. It affects most muscles in the body. It causes low muscle tone, and server breathing difficulties. Most cases are usually identifiable from birth. Affected children have poor respiratory capacity and are often reliant on ventilators and oxygen. Many of the stories I had read of other parents with boys with this condition had their children trached, meaning a tube is inserted into the neck to help with breathing. The X-Linked part of it means only boys can get it. Mind you there are 3 types of the MTM and girls can get the other two forms. Myotubular Myopathy X-Linked is such a severe condition that a long term survivor is a 1 year old child. But we have heard of children who are up to the age of 13. This gave us a lot of hope for Josiah.
When we had the meeting where we were told of this condition we only got the negative information and were told that Josiah had the condition quite severely and he would most likely not make it if he was taken off the CPAP. As you could imagine we were shocked and devastated. We now knew that there was every possibility that Josiah would not be with us for long. But we remained hopeful that this wasn’t going to be the case.
My dad did a lot of research for us and as it turns out there are little battlers out there that are fighting it and are doing exceptionally well. They were given the chance at life. And are enjoying it! There are also a lot of parents who gave their child that chance but unfortunately lost their little ones to the battle. But still gave them that chance. And enjoyed the time they had with their child.
Other parents took the advice of doctors and made the impossible decision of letting their baby go to the angels where they watch down on them. It is just a compassion in their hearts to let go and stop the pain and suffering to that innocent life.
Our hearts go out to all the parents with a child with any sort of a disability. It’s not an easy time in their lives. To see your precious child go though so much pain and difficulty it’s not what any parent wants for their children. And you just try and do what you think is best for them. Parents try to protect their children from all pain and terrible issues in the world, but at times it’s just not possible, and we feel helpless because we can’t do anything to help them. All we can do is just be there and hope it’s enough.
We owed it to Josiah to see if he too could have the strength and fight to conquer the world and get though what would be the hardest time of his life, the fight to live, and the fight to see the outside world.
We just wanted him to see the world for beauty is holds. We wanted him to see the sky, the moon, the stars, the green of tress, the sparkles of rain and all the colors and wonders that the world had to show. We didn’t want him just to see the inside of a hospital and the white walls he had spent hours looking at each day. Most of all we wanted him to know what home felt like.
We appreciated more of what life had to offer and beauty of the simple things we take for granted each day like the wind gently blowing in your face as you walk with the sun shining down on you, and like leaves falling from tress. Simple things that we knew were a great possibility that Josiah would never see or feel. This whole situation made us grateful for life and how fragile and precious it truly is.
Many times we were told ‘to consider how Josiah was feeling going thought day to day life and to put ourselves in his place and what we would want done if it were us’ and how much money it would cost too take him home with the medical equipment and assistance he then needed. We were told ‘how much of a burden it would be on us and how much effort would be required to look after a baby like him, and that medically is was cruel to have him live the way he was’.
We were told to ‘consider letting go’, and let ‘nature take its course’ when we heard this we just thought nature did takes its course when Josiah was born. He wasn’t breathing at birth and back in the day Josiah would have been classed as a still born and that was that. But medical teams stepped in and made his life. They saved his life! And now medical staff was telling us to let him go!
They said it would be peaceful and painless for him because he would be sedated. The thing is that Josiah doesn’t have enough strength to swallow his saliva and has trouble taking in enough breath. So that means Josiah would have passed away due to respiratory failure from not taking enough oxygen in and from choking on his saliva. To us that was not peaceful or painless.
We never considered letting him go. We had to have strength and faith and had to believe in Josiah that he had what it took to prove them wrong. Sure medical statistics showed Josiah had less than 80% chance of survival. But in our hearts and minds we had to see him for him and what sort of strength he had. We had to give him the chance at life. The doctors advised us they didn’t think it was the right thing to do. As angry as we were at them for that they were just doing their job. And we were doing ours.
The doctors put in place a training list for us, everything we had to learn to do to look after him at home. We learnt to do suctions and hook up his feed pump, handle him special ways because he can’t support his weight and is very ‘floppy’ as the doctor’s put it so he needs to be handled a certain way and he needs to lay a particular way.
About 5 days later we were doing all his cares at the hospital and knew when he came home we would need to set a routine because he needs 24 hour care.
Josiah’s time on CPAP was decreased to see how he would cope and he was doing really well. About 3 days later he was taken off completely and was moved to the High Dependency Unit (HDU) 2 rooms down from where he was.
We were all so proud of him and the extreme changes he was making in such little time. On Friday the 22nd of August we had another meeting with the doctors and the team of ICN, the news we were about to receive couldn’t have been any better it was what we hoped and had been waiting for since Josiah was born. They said now he was off CPAP and doing well, and that they felt confident we knew what we were doing with him we could finally go HOME!!! Our little fighter was coming home, he had proved them wrong he was going to fight and do his best to live. It was the best day!
We were meant to get transferred back to the Logan hospital for what they call room in for two nights on a Monday but that didn’t happen until the Wednesday. We spent Wednesday and Thursday nights in a private room at Logan Hospital in the Special Care Unit. It was just great. Just the three of us. It had been a long time coming.Â It was here, this day that we had spent every hour since Josiah was born hoping and praying for. We were now bringing our little hero home. We were so excited.
We went home on Friday 29th of August 2008, almost 3 months after Josiah was born. We walked into the house and it was all decorated for Josiah’s welcome home. Shane had gone home the night before and had decorated for us with the help of his sister and step mum. It was absolutely beautiful. We put him in his portacot in the lounge room and sat by him for a while. It was the best feeling to finally have our little boy home. Josiah just slept. We think he was just as excited to be at home as what we were.
It’s now October 2008 and we are blissfully at home. There’s no other place we would rather be. Shane and I take turns staying up just to keep a watchful eye on him. He’s doing so well. The secretions are getting better especially while Josiah is sleeping. He smiles heaps and loves watching his DVD’s. The best part of his day we think is his bath time it’s when he is most active.
There are days were it is quite challenging. Mainly because we are tired and our past sleeping habits have been thrown out the window. Shane has had to give up work, due to the constant care Josiah needs. Which has put a very big strain on us financially; we have just enough to pay rent and do basic shopping and put some money towards bills. So as for saving for things we really need such as a car is just going to have to wait for a while. Same with our dream of one day being able to own a home will have to go on the back burner. It’s tough but at the end of the day we wouldn’t have any other way. Our lives have had to have some major adjustments, but it’s all worth it. When bad days are here we push on through and know one bad day is not worth worrying about because of all the good days we have and will continue to have.
We have been up to the hospital a few times because Josiah has decided he didn’t like his feed tube and has pulled it out. It’s a long process to get it put back in, because it has to bypass the stomach. It gets feed through the nose and through the stomach and hopefully it goes into the small intestine. Then he gets x-rayed to make sure it is sitting in the right spot. After that we need to wait four hours just to be sure it hasn’t dislodged itself. This process can take up to 12 hours or longer depending if the tube is in right.
Mind you a few weeks ago we had to get it done and it took 5 days! We went to Logan hospital on a Wednesday. They attempted to put the tube but it wasn’t sitting right so Josiah got admitted for the night and was put on IV fluids. The next morning (Thursday) they tried 5-6 times and said they got it, so we went home but after a 4 hour feed we did suction and sucked up milk which isn’t meant to happen.
So we went back to Logan Hospital (Thursday afternoon) and Josiah was put on IV fluids again and stayed another night. The next morning (Friday) Logan took and x ray and still said it was in the right place and they weren’t sure why we were getting milk when we did a suction. So we got transferred to The Mater Children’s Emergency late Friday afternoon.
When we got there the Mater took an x-ray and they agreed with Logan it was right. But we knew differently but we were told by the doctors it was fine. Shane went home with my mum while I waited for ambulance transport. The hospital didn’t like the idea of Josiah traveling in a bassinet. Well that took all night and at about 2 a.m. Saturday morning Josiah had a major spew. His first spew. So I had to call Shane to come back up to the Emergency department. There wasn’t anything the doctors could do until the morning. So again Josiah went on IV fluids and we sat in the emergency department until about 10 a.m., then another doctor requested another x-ray was to be taken and finally the doctor agreed with us that the tube wasn’t in the right place and was going to try to do it again. It worked, but just to make sure Josiah got admitted into the Mater Children’s Hospital for over night observation.
The next morning (Sunday) we waited for the doctor’s rounds and we were told all was well and we could finally go home. I think that was the most frustrating and most challenging time we have had so far. We just hope it never takes that long again.
Josiah is now 5.3 kg and 62.5 cm long. He is getting a lot more movement with his legs and arms and has a very nice grip. His neck movement is getting so much stronger, he can only just move his neck from side to side but it takes a lot out of him. Slow and steady is the key for a lot of patients when it comes to the hospitals. Josiah is making remarkable progress and always surprises us with something new each week.
The best thing to me is they way he smiles. He smiles with a heart full of love and innocence. We think that he knows what’s going on and understands he has to keep fighting to enjoy the life that has been given to him and not let his condition get in the way of that. He is an inspiration to us all. He’s a strong little man that has the fight to succeed.
We get a carer in every Thursday for five hours from a support service call Xavier. They offer us all sorts of support. It’s such a relief to know we can call on them anytime with any concerns or if we need with anything. We owe a lot to Xavier, because without their support and services we would truly be in a terrible mess. There have been a few times we have had to call them to take us to hospital appointments because we don’t have a car and it’s not ok to travel with Josiah on public transport due to the way he has to be positioned. He has to be laying down most of the time. And a lot of public services don’t allow you to have an open pram aboard. So it was a relief to have Xavier to support us in a big way.
They also got us in contact with another mum who had a little boy with the same condition; it was great to talk to someone who had been through what we are going though, we didn’t feel so alone anymore.Â Xavier has been a big part of how we get by. We owe a lot of thanks to all the staff. Especially our carer and our case worker.
Josiah has fortnightly appointments with a physiotherapist at Logan Hospital, and regular check ups at the hospital and with our local GP. He is doing so well. The physiotherapist is even impressed with Josiah’s progress. He has exceeded every ones expectations. And in lot of ways has exceeded ours.
The best thing we ever did was not take the advice of all the doctors and followed our hearts, I think deep down we knew that Josiah had it in him to fight. He’s such a determined little fighter. We are so grateful for what god has blessed us with, a beautiful little boy; people who are expecting a baby always say ‘we’ll be happy as long as we have a healthy child’. We even said that, but the truth is we are even more grateful and happy for what Josiah has, and is going though, we certainly appreciate life more. It’s shown us just how special our little man is. And we wouldn’t change any part him. There are a lot of people who prayed and who is praying of Josiah, and slowly those prayers are being answered. But at the same time we are just so happy just the way he is. We see life now for what it truly is and not for what we just want it to be. Life is just so precious and delicate and we really don’t realise it until something happens were a life is threatened with sorrow, tragedy and even death.
There are so many of us in the world that take our lives and the lives of the ones we love for granted not knowing how to take each day for what it truly is. We run though our lives like a marathon not ever realising what is truly important to us.
So please we beg you to take time out from the routines you set for yourselves on a daily basis and spend time with your families or even just pick up the phone and let them know how much they mean to you because that is what is important.
Too many of us are too busy and too consumed with has to be done around the workplace or what needs to be done at home. Family time has become an occasion when we get the time to do it. It’s no longer a priority of our lives because we are consumed with very thing else that we see as needs to come first. Just set one day out of the weekend to spend with the people who mean the world to you. It doesn’t need to cost a great deal if anything it’ll cost you a few hours out of the week.
Head down to your local park and kick a ball around or have a picnic or even just an evening walk, will make such a huge change to you and your loved ones. By the time you realise that appreciation for life and your loved ones starts with you it’s usually too late and when it is too late that’s when we start with the regrets and the ‘I wish I did this’ and ‘I wish I said that’. Life is not an asset, life is not something you should take for granted, You can’t get it back when it’s lost, life was meant to be lived and enjoyed.
Your life is a precious and was meant to be enjoyed by not only yourself but by thoses thoses that mean the most to you and by those you encounter along the way.
Josiah has touched the lives of so many people but most of all he has touched our life and changed our outlook and perception of life, at a one time we thought he would never be able to see such simple everyday things such as the never ending blue skies of day, the black velvet sky of night that simmers with the diamond stars, to the soft green grass that lies all around our feet, the tall trees that birds sing from. To feel the light warm sun on his little face, or ever see the beauty of rain. These are the natural beauties that are all around us and we walk by everyday not even knowing how magnificent they truly are.
We are so glad he is fighting everyday to see what the world has to show. So next time you wonder what life is about, look around you and take a deep breath. And appreciate all the wonders that the world has to offer. Most of all appreciate the best gift given to you, the gift of life, start living it and make it a life to remember, a life that you can be proud of not only for yourselves but for your children and your children’s children and all the generations that will be here long after we have left them. We must leave out stand in the world. Josiah is truly an inspiration to us all, he is the meaning of courage and sprit and a role model to the saying of ‘never give up!‘
We couldn’t have asked for a more perfect son or a more perfect life. Yes there are days that get hectic and there are days where Shane and I disagree but at the end of theses days we know tomorrow will be a better one.
Along time ago I was told a very simple phrase which has stuck in my head:
‘Your life is a story book, you can’t make a new beginning but you can add chapters. Where a chapter ends a new one begins. So start a new chapter in your story book. Make it a tale to tell’.
See life and the world for what it is and what is has to offer. Not what is could or should be. Be guided by your faith, believe in yourself and others, hope with your heart and Soul. Have the courage to live each day to the fullest. And let your sprit define who really are and most importantly love everyone and everything. Life is just too short to have enemies, regrets, and pity. Make the best out of what you have and be forever grateful for the both the good and the bad.