By Stacey

BryceOn Wednesday the 12th of December 2001, at 37 weeks pregnant, I went  in to the Geelong Hospital to have an ultrasound. The doctors weren’t overly concerned but wanted to check our babies size, as it felt very small (and hadn’t grown in 5 weeks). I could tell that something wasn’t quite right, but nothing was said. I wasn’t told to see the docs immediately so I assumed it wasn’t to bad and as I was due to see the doctors in two days anyway we tried not to worry to much about it.

At 2.30pm on Friday the 14th December I went in to the hospital for my appointment.  Before I had even sat down the doctor (I can’t remember her name) told me that there wasn’t enough fluid around our baby and that it had stopped growing at least five weeks earlier, and was still very small (approx 5pounds). Then she told me I had to come in to the hospital in the morning to have a caesarian. I just looked at her, sat down, and then burst into tears. Then I stood up and just walked out of the room crying. Darrin (who was working at the hospital that day) arrived at that moment and took me back into the room to talk to the doctor. Everything was arranged for our babies birth the next day.

At 7.30am on December 15th Darrin and I walked into the maternity ward at Geelong Hospital as we were instructed to do. Once settled in, a paediatric registrar came and spoke to us about what would happen once our baby was born. A lot of low birth weight babies have low blood sugar levels and need to have an IV inserted to supply glucose to maintain the levels until the baby can do it alone, usually taking a couple of days.

We were taken to theatre at 9.45 and our roller coaster ride began. At 10.40 we gave birth to a gorgeous baby boy, who we named BRYCE JACOB McKIERNAN, he weighed 2.43kgs (5pounds 4ounces). He was so tiny (our last baby was 4.540kgs) and he looked just perfect. As suspected he did have low blood sugar levels and needed to go to the special care nursery. He was whisked off pretty much right away.

In the nursery Bryce was put on oxygen, this happens with lots of babies and isn’t a huge concern(we were told). Later in the day I went with Darrin and the kids down to the nursery to introduce Tori and Riley to they’re baby brother. While there I attempted to breast feed Bryce, but although he had not been fed yet, he just didn’t seem to have the energy. Again we were told this was normal newborn behavior.

By next morn we were told by the paed reg that Bryce was doing much better and as his sugar levels were stabilizing he would probably be up on the ward with me in a day or so. Three hours later the same man came and told us that Bryce wasn’t coping very well and his need for oxygen was increasing rapidly. And after having a blood test, ECG, and chest x-ray, it was thought he had a heart condition called Hypo-Plastic Left Heart Syndrome. After consulting with a cardiologist (Dr Andrew Davis) at the Royal Childrens Hospital in Melbourne, another IV was inserted and Bryce was started on a drug called prostin and it was decided that a team of doctors called Newborn Emergency  Transport Service (NETS) would drive down to Geelong from Melbourne and take Bryce to the Royal Childrens Hospitals Intensive Care Unit.

I just remember being in total shock. How could our baby be so sick if they were ready to send him up to the ward with me two hours earlier, but worst of all how do we tell Tori and Riley that their baby brother was so sick.

Telling them was so hard, the look on their little faces was unbearable, I just wanted to curl up in a ball on the bed with them and hold them. But we had so many plans to make. My sister Susie and her husband took Tori and Riley home with them(saying good-bye was soooo hard). We then organized my discharge from the Geelong Hospital(the docs were very reluctant to do this, but I told them I was leaving whether they agreed or not).

By this time the NETS team had arrived and were stablizing Bryce for the trip to Melbourne. This took close to three hours. He was hooked up to a ventilator.  Our parents stayed with us until Bryce was ready to be transported. Watching strangers take my newborn son away hurt so much. I didn’t think I could ever feel worse than I did right then.

When we got to RCH we went straight to EMD. There we saw an ambulance pull up. It was the NETS van with Bryce inside. Everyone in emerg stared as they pulled the crib carrying Bryce out of the back. I just wanted to yell at them to stop staring at my baby. We left emerg and went with Bryce up to the ICU. We had to wait in another room while they settled Bryce into his place and carried out some tests to see what Bryces condition was.  It seemed to take hours, and all I wanted to do was go and see Bryce.
Finally we were able to go and see our baby. And what a scary sight it was. He had tubes everywhere, and the ventilator. Nothing could have prepared us for that first view of Bryce looking so helpless, surrounded by machines, and the sound of all the alarms going off.

Soon after we were taken up to Andrew Davis’ office. There he and Sophie (Bryces fantastic ICU nurse that night) told us the results of all the tests Bryce had. He thankfully did not have Hypo-plastic Left Heart Syndrome, but he did have a list of other complicated abnormalities. 1, Interrupted Aortic Arch, 2, Double Outlet Right Ventricle,3, Pulmonary and Aortic Stenosis,4, Bi-Cuspid Valve,5, Multiple VSDs as well as some abnormal tissue growth within his heart. On top of that somewhere between Geelong and Melbourne Bryce had suffered a stroke. We didn’t think it could get any worse than this, then Andrew told us of a disease called Necrotizing Enterocolitis, NEC, (a disease caused from lack of blood to the lower body). But at that stage Bryce was clear of it. We were asked if we had questions. My only one was is my baby going to die, and they had to tell me they didn’t know, but if our babies life was a tunnel, there wasn’t very much light at the end of it.

We went back to Bryce without a lot of hope but heaps and heaps of love. Bryce had IVs running from everywhere. I really wanted to just pick him up and cuddle him, or even to hold his hands but both were taken for Iv’s, so all I could do was rub his head. I remember begging Bryce to be ok, to stay strong for mummy, daddy, Tori and Riley. Just constantly telling him that we love him so much.

By now it was about 3am, Darrin and Sophie and I think Andrew convinced me to go to a room and lay down. I really don’t know if I slept, but by 7am I managed to get Darrin to take me back to ICU so I could see Bryce again. He had made it through the night, but things weren’t going very well. In the 4 hours that we had been gone Bryce had developed NEC. Bryce’s tiny belly was extremely bloated and was turning a horrible dark grey color, because part of his bowel was dying. I didn’t think we could ever feel worse than we did right then.
Soon after we were asked to go into the meeting room in the ICU with Andrew Davies, Stephen(ICU registrar), and Melissa(Bryce’s nurse for the day).Once in the room we were told just how bad the situation was. The doctors could no longer see a light at the end of Bryce’s tunnel. They told us it was time to think about our options. These weren’t easy. We had to decide whether to stop all medications and let Bryce die, or to let him keep fighting and hope that he had the strength to fight this huge battle. I remember screaming “Please don’t let my baby die, I don’t want him to die”. We had to think this decision through. Do we let our boy go peacefully, without pain, never knowing if he could have made it through? Or do we let him try and fight and maybe lose? No parent should ever have to make a decision like that.

We went back to Bryce and I put my hand on his. My gorgeous little boy gripped onto my finger and didn’t let go. Right then we made the choice that if Bryce wasn't letting go then we wouldn’t either. We told the docs that we chose to keep trying. We called our families and asked them to come up and see Bryce. Telling them to come because the docs didn’t think Bryce would make it was so hard, I can’t remember what I said when I rang my mum. At this point we really needed to see Tori and Riley. I really needed to cuddle my kids. Every one made the trip up to Melbourne to give Bryce some more love to help him fight. And fight he did!

Two days later Bryce’s belly was very shiny and very grey and part of his bowel had perforated. He was rushed to theatre to have his bowel repaired. When he returned from surgery he had a huge jagged scar that ran about 15cms across his tummy and a colostomy bag. It was a scary sight but he was alive.
The next few days were touch and go, but our boy had an amazing will to live, and within 3 days he was being fed the breast milk I had been expressing for him. Every day after that he got stronger and stronger. Soon the docs started to talk about the possibility of doing Bryce’s heart surgery. Things were looking so much better than they had.
Then on the 29th December Bryce’s skin turned yellow. Many tests were performed but we could not find a reason for it. It was then assumed that his liver was reacting to just how sick he really was.

Christmas and New Year came and went (and were very emotional, but happy none the less because our boy was alive). But Bryce was still catching quite a few infections.
Finally we were given the news we had been dreaming about. Bryce was to get his surgery on the 15th January 2003. The docs decided that if they didn’t do it now Bryce would never have it he was getting too sick to cope with it. Unfortunately Bryce had other plans and got yet another infection. Surgery was postponed for two days later. Two days seems to take forever when your babies life depends on it.

At 7.30am on the 17th a team of doctors came into ICU and wheeled Bryce into theatre. We didn’t say goodbye, we said “See you later”. Then we had the longest 8 hours of our lives. Our parents came and stayed with us for the day, everyone tried to get me out of the hospital but I didn’t want to go far  in case Bryces heart surgeon(Christian Brizzard) rang.
By 2.30 we were back in the ICU waiting room because I wanted to be close when Bryce came out. While waiting there some friends of Darrin from Geelong had sent a huge blue teddy bear to ICU and a massive balloon saying get well. Soon after Bryce was wheeled past the room and we were given a thumbs up. OUR BABY MADE IT THROUGH.

Finally one week after the heart surgery and after being on a ventilator in ICU for five long weeks our still yellow Brycey was wheeled up to 7 west on the 24th January. He was only on two litres of oxygen and looked amazing. I couldn’t wait to give him a bath and dress him for the first time. He still had a central line in his groin so the bath had to wait another 4 days until it was removed. The day that happened he was right in the bath and he absolutely hated it. His face was screwed up in the biggest frown and he cryed the whole time.
After another week Bryce managed to cope without O2 so we finally had all tubing (except the NG tube) removed. It was amazing to be able to see his gorgeous little face without all the tape on it. But he was still catching every infection at this stage so he was constantly having blood workups to see which bug he had this time and still needed the IV in for all the Abs he needed to fight the infections.
We attempted to feed Bryce orally but he just gagged on the milk. A speech therapist came to help with his feeding issues and after watching Bryce drink (and gag)  she called in the ENT Drs. They had a look down Bryces throat and found that he had Left Vocal Cord Palsy. They recommended NIL by mouth as there was to high a risk of aspiration. As I had never really had the chance to feed Bryce orally this didn’t cause me any real concern. It was something I could worry about later. The Drs were still concerned by the fact that Bryce was still yellow and carried out many tests but could still not find a reason for it. It was decided that at nine weeks old Bryce could finally be sent back to the Geelong hospital as soon as all his paper work could be completed. We were told that we could drive him to the hospital ourselves on the 15th Feb 2002. The night before on Valentines day Darrin took me out for dinner. Upon arriving back at the hospital to see Bryce Darrin pulled a box out of his pocket and in the foyer of ward 7 west he proposed. I think I was the happiest woman alive that night. Our baby was going back to our local hospital and my love asked me to marry him.

The next day we loaded up nine weeks of belongings into our car then we put our gorgeous boy in the car for the first time. We were so happy but so scared to be out on the road with Bryce with no Drs around. As we were driving there was a huge thunder storm, I was petrified and Bryce just slept through it. We made it to the Geelong hospital and took Bryce to the kids ward. We settled him in and signed all the paper work. Then we told the nurses all his habits (and there were a lot of them), and that he wears his own clothes and has his own blankets. Suddenly I was scared to leave Bryce, I knew everyone was quite capable of caring for him but I worried because the safety net of the larger hospital was gone and these nurses didn’t know him. We decided that Darrin would stay at the hospital overnight for the first night then after that we would both sleep at home. We gave Bryce a feed and left for home to unload the car and pick Tori up from school and Riley from my sisters house.

We told the kids they were getting a treat that night and we were taking them to see Bryce at the hospital. Tori was worried because we were driving the wrong way. When we went inside the Geelong hospital she let out an extremely load squeal. She had just realized that Bryce must have been sent to our hospital now. They were both so happy to have Bryce so close to home, especially when they realized that mummy was sleeping at home from now on. We spent a few hours visiting Bryce then we drove home and went to bed.
Bryce finally made it home for the first time at 12 weeks old, in time for Toris 6th Birthday party. She was so happy to have him there.
Bryce was thriving at home. He still had his colostomy bag and his NG tube but within 3 weeks he was feeding orally. His NG tubes was only used for his medications (he was on 11 at the time) and he was happy. We started getting smiles and he seemed to be developing well considering his start to life.
Unfortunately 8weeks after coming home our world was turned upside down again. We woke up one morning in May to discover Bryce had slept through the night. I was almost to scared to look in his cot. Bryce was very pale, almost grey and very hot.

My first thought was to feed him as he still had blood sugar problems (hypo glycaemia) . He drank 250ml of his milk and it  instantly came out the colostomy bag. I cleaned him up and he looked much better. Darrin went off to work after I told him Bryce would be fine and I would take him to Dr Hewson that day. I made Toris lunch for school and got all the kids dressed and ready to go. We drove Tori to school and after walking into the grounds Bryce went limp in my arms. I put Bryce and Riley back in the car and drove to the hospital. We made it to the kids ward and I almost threw Bryce over the desk to the nurse on duty. She then passed him to the Dr and they ran into the treatment room.
I was left standing there not knowing what to do. Then I heard an announcement come over the PA system. It was a code blue to Heath wing 3. I collapsed onto the ground in tears, that call was for my baby. A nurse came out to tell me that Bryce had stopped breathing and had to be resuscitated but he had started to breathe again and that the doctors wanted me to come in to him. He looked so helpless.

After a series of tests were done it was found that Bryce had Rota-virus a type of gastro. He wasn’t improving and 24hrs later was on 10 litres of oxygen with his saturations sitting at only 65%. He needed more than Geelong hospital could do for him. He was transferred back up to RCH with a ventilator breathing for him.
This was the way life was for Bryce over the next 7 months, he would be sent to ICU. When he no longer needed the ventilator he would be moved to a ward then transferred back to Geelong hospital. This happened every month or so, for a variety of reasons. Bryce could not fight even the simplest of infections. But he also had seizures, ended up with a DVT (deep vein thrombosis) in his right groin, had numerous bouts of the flu, bronchitis, and pneumonia. Poor Tori and Riley never knew where they were going to wake up. They would go to bed at home and wake up at my sisters house. They knew that meant Bryce had gotten very sick during the night and had to be moved to the Melbourne hospital. They had to deal with so much and I wasn’t there to help them with it. We all just coped as best as we could in such a horrible situation.

Finally in October 2002 after going into right heart failure during a bout of the flu, it was decided that Bryce needed another heart operation. He was 9 months old and the surgeon really didn’t feel he would cope with another surgery but it was his last hope. Bryce’s amazing cardiologist and the cardiac registrar were able to convince the surgeon to perform the surgery once Bryce was totally over the flu. This took two weeks. Bryce remained on oxygen and was kangaroo pump fed through a tube in his nose at a very slow rate (this was all he could cope with by this stage). Finally Bryce would have a chance to live outside of a hospital. The surgery was a success. Bryce was off oxygen and going well when he was transferred back to Geelong hospital.

Around the same time my grandfather was in Geelong hospital with end stage liver cancer. Sadly he lost his battle. The day we buried him I was told by Bryce’s paediatrician that Bryce had gone into heart failure again and this time there was nothing else they could do for him. We asked them to do whatever they could to make him comfortable. His Dr gave him huge doses of lasix (a drug to make you pee) via his IV. This was all they could do. I cant describe the feelings we all felt at this stage but my heart was well I don’t know what it was but everything hurt so much. Tori and Riley just always looked sad and that broke my heart as much as seeing Bryce like he was.
Two weeks later Bryce came home for the first time in months. He was eleven and a half months old. We had a huge party two weeks later for his first birthday, I think we had more medical staff (Drs and nurses) there than family and friends. This was a day we didn’t ever let ourselves imagine. We had a whole family at home together and were celebrating a birthday we never thought would be.

Bryce came on leaps and bounds, after two more weeks he was totally orally fed and had an appointment to see his geneticist………….
I had come to dread these appointments because the genetics team were determined to label Bryce. I was happy in my naivety, of course he was small and so far behind the norm, look at the start in life he had. Every time I took Bryce to see Ravi he had a different thing that he was sure Bryce had. Don’t get me wrong, Ravi is a great Dr and a really nice guy but I just didn’t want to know anymore. We had been through enough and I was happy to just deal with things as they come. But we went to the appointment and on 15th January 2003 Ravi told us about this genetic condition called Kabuki Syndrome and that they were sure Bryce had it, in fact they were positive.
I thought the Dr had made it up, who has ever heard of Kabuki Syndrome. He also told me not to look it up on the internet as information could be misleading and is not always up to date.

Of course as soon as I got home I told my neighbors (who had the internet) and they looked it up for me and printed off as much information as they could find (as we all know that wasn’t much!!!). Over the following months I dreamed of meeting another KS family. Bryce was still in and out of hospital, an ear infection could see him in for over a week and this happened every couple of weeks. One week in hospital and one week out, this went on for months until Bryce was diagnosed with an immune deficiency. He was started on prophylaxis antibiotics which helped a little. It would have been so nice to chat with someone who really understood exactly what I was talking about.
In 2003 Bryce was in hospital having his colostomy closed (oh happy days) when we had the chance to meet another KS family. I was so excited to meet them. We were amazed at the similarities in the kids.

In 2004 we met some more families at a get together in SA but it was all girls and I was itching to meet a little boy. Then in 2005 we had the chance to travel to Sydney to another get together. I was so excited because this one had boys coming. But in true Bryce fashion, six weeks or so before the get together we were told at a routine cardiac appointment that Bryce’s heart wasn’t coping too well again and he would need more surgery. I was told to take him home and the Dr would call me the next week to let us know the details. What a week that was, I was so upset, Bryce seemed so well yet he needed more surgery. It is hard to take at times to say the least. But that was life with Bryce.

The Dr called and told us the surgery had been booked for October 27th, the day before the family get together in Sydney. Waiting for the surgery date was hard, we had never been in this situation before. Bryce had always been really sick and surgeries were life or death and the waiting was always done as an in patient at hospital. Trying to keep Bryce well and away from germs but not wrap him in cotton wool was difficult, but we did it. He had the surgery and it went really well. It was then that we realized he really had been looking pretty bad before the surgery, because now he looked so pink and healthy. He was only in hospital for 5 days and came right home. It was amazing. We took him home and went to netball to surprise Tori and Riley who didn’t know he was coming home yet.

Since then Bryce has been diagnosed with a seizure disorder and unfortunately Pulmonary Hypertension (progressive, high blood pressure in his lungs). He also has left hemiplegia, he will be having Botox therapy in a little while but it will require surgery to release muscles in his left leg very soon.

Life is tough sometimes but we manage. I have learnt to deal with things as they happen and to not look to far into things, sometimes what looks really bad might just be a bad day.
I would like to thank two people who have become such great friends over the past two years. We met Peta and Adrian Colton in 2006 when Darrin and I hosted a KS family get together here in Geelong. They are also the founders of this wonderful web site. And are the reason we are able to find fantastic information that was made for us Aussies.

I could write another 8 pages about everything else that has gone on in Bryce’s life since he was diagnosed with KS but I have cried enough. Bryce is standing beside me telling me he found his photo album we made him with his photos of the Wiggles concert and the party he had for his 4th birthday two years ago. He is singing a song from one of his DVDs and is walking around the house trying to find his favorite wrestling figurine. I guess I am trying to point out that Bryce got to grow up into a 6yr old, he goes to school and has made some friends and is really happy (although very spoilt).

Tori and Riley has grown up into amazing kids. They have survived, actually are still surviving a childhood no kids should have to live in, one that involves a sick brother or sister. Tori is now in high school and was accepted into an accelerated learning program and Riley is going really well in grade 4. All the kids were very happy when we had a little girl in 2004, Hollie is now a very cheeky three and a half year old, who loves going to kinder.

I thank my lucky stars every single day that I get to growl at Bryce for being  naughty (coz all little boys get naughty, don’t they?), and we get to take him and the kids on holidays and play games. But mostly I am so happy to get to do all the things people who don’t have sick kids take for granted, I get to take Bryce to school. I get to put DVDs on for him and watch him jump on the trampoline  and we get to watch him at Auskick and even karate (both of which he now does). But my most favorite thing, I get to take photos of all my kids together doing nothing at all and oh man does that feel good.

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