A road less travelled .. Cam's Story

The following is an article I wrote for the Multiple Birth Newsletter:

I’m writing this not to get any sympathy, as I hate sympathy of any sort, but just to share and give an insight into lives that may be different to your own .. I strive to feel that Cam’s life and mine is “normal” so to speak, but in fact that couldn’t be further from the truth.

My journey started over 6 years ago, where we found after 8 years of “unexplained” infertility that we might need a “helping” hand in being able to have our children, in complete denial for the first 5 years, and then complete obsession for want of a better word for the next 3.

We started the IVF pin cushion journey, and we were so lucky amidst tears to be told the wonderful news we were pregnant. Our scan later showed it was twins, all the way home from Hamilton all I could say was twins OMG, twins OMG.

Then severe hyperemesis kicked in and I spent the next few months bedridden, in and out of hospital with severe dehydration and vomiting, no medication would reduce the severity, but finally at about 22 weeks it subsided to just 3-4 times a day with medication.

Things were looking up and I went back to work, and on the last week of work at 28 weeks we received some unexpected news. After continual good “text book” scans, at 28 weeks, during a routine scan, it was detected that Twin A seemed to have something a bit awry going on with it’s heart.

The paediatrician phoned the cardiologist in Auckland, and said he suspected something major was wrong with one of the valves and that the heart did not seem to be pumping right. After a 2 week “nightmare” wait, where I could go from complete denial to a sobbing mess in a few hours, we drove to Auckland to await our unborn children’s fate.

At 30 weeks we were told that Twin A had a severe congenital heart defect Critical Aortic Stenosis, and severe Hypoplastic Left Ventricle. In plain English the valve that allows blood to go out to the body was completely useless, and that the left ventricle (pumping chamber) on that side had not grown, and was severely deformed, essentially our baby would have half it’s heart.

At the time, I had no idea what on earth this meant, all I heard was that my baby was going to be really sick when it was born, and that the odds if the baby was born at full term, and was a single baby, with no other health issues was around 60%. The baby would need surgery within a few days of birth, then if it survived this then again at around 3-4 months then later on when they were between 3-5 years old. I had so many questions, fears and overwhelming numbness …

The next few weeks were a roller coaster of emotions, and family, friends and my midwife were as helpful as they could be, while all I wanted was answers, in the end I stopped trawling through the internet, as all I read were sad cases, and not much survival expectations etc.

We now know that the surgery for this defect had only been introduced in NZ, about 5 years before my boys were born, and they had only began performing the surgery on under 2 kg babies in the 2 years prior to Cam being born, so there were no real indications on what would happen, and so it was all an unknown even for the experts.

At about 32 weeks I was hospitalised for high BP and the onset of bad toxaemia, so as a precaution I was sent up to National Womans Hospital in Auckland for bed rest, and also I now think to make sure we were close to the Cardiac Ward, as Taranaki Base Hospital, didn’t feel overly comfortable with me having the babies in NP, as all babies they had delivered with this condition had passed away.

So up I went in the plane, not knowing what the future held, while my husband followed with the “full” nursery for the babies in the car, as we were unsure how long we would be up in Auckland, how many of our babies we would be bringing home, and what in fact we needed to bring. We really had no idea.

At 34 weeks, 3 days Michael entered the world first with a hiss and a roar, and Cam followed 2 mins later after a first attempt found him getting a little stuck. Cam was whisked away immediately after he was born, and put on an IV drip to stop his heart following nature’s course, where holes and bits and pieces close with the babies’ first breath.

Their first photos
(Cam and Michael 1 day old)

Michael continued to do well and was off CPAP pretty early, and was transferred to Parents and Infants Nursery (PIN) for feeding in growing for the next few weeks. Cam was unfortunately transferred to the Cardiac ICU a day later as he was in respiratory distress, and congestive heart failure. He was intubated that night as his heart began to fail. I still had not been able to hold this little man, and one of the ICU nurses upon hearing this, allowed me to hold him on a pillow, as any skin contact, sent his heart racing, and looking pretty unwell.

Fast forward to the next day and we were told he needed surgery immediately, and so this little babe was taken out of our hands, and surgery preformed on his heart, by the surgeon. Unfortunately his heart was unable to cope and he wasn’t able to cope off heart bypass on his own.

He came back from surgery on a machine that was working for the left side of his heart (called an LVAD for those who want to look it up). By the next day our little man was looking very worse for wear and the surgeon came and talked to us about “trying one more thing” before she was going to leave it in our hands as to what the next step would be.

On the Wednesday morning we again handed our little babe over to the professionals and we both were at a complete loss as to where to turn. My family had come to be with us during this surgery, and during the surgery that went for the whole day, we tried to busy ourselves with our other little man, who of course needed us (well my milk) as we tended to his cares.

At about 10pm that night the surgeon came and talked to us again, with some more bad news that Cam had again not come off bypass, that his heart had taken a real beating, she had reversed the earlier surgery, and then preformed another surgery, (the first step in a 3 part stage of surgeries), and that he was now on a machine that would function both for his heart and lungs (called ECMO). This machine was connected to the arteries inside and would pump the blood out of his heart to the machine, put oxygen in to it, then pumped in to the artery in to Cam’s heart, all the while keeping it at the required temperature. Basically a heart and lung machine, outside his body. When his kidneys started to fail, this also was “added” as part of the machine allowing his whole body to “take” a rest.

Mum and Cam's hand ..

This of course was not without its risks, and he had blood tests constantly, brain CT scans, x-rays, functions tests, you name it he had it constantly during each hour. She also told us that some of Cam’s valves were abnormal and a few extra things they hadn’t expected to find in his heart had attributed to the bad result.

We were given constant updates during the 5 days he was on the ECMO machine, and unfortunately not many of these were very promising, however in my heart (even though we were given no hope from the professionals) my husband and I now when looking back, never ever wanted to believe what we were being told.

Cam continued to make no progress and we were continually told that he was a very sick little guy, it was in his hands now, and that they had done all that they were able.

One morning we were called after doctors rounds and told that Cam was being taken off ECMO and that we would need to come and visit him … We thought we would be given more warning, but they felt that he was making no progress either way, so thought they would take him off the machine, after a few failed attempts over the last few days. Well our little man decided that he was going to prove a point, and held his own for the first 15 mins, then 30 mins, then hour, then 2 hours, and finally after 24 hours, then 2 days, he was still with us, but on complete intubation, with the “Bird” still breathing at maximum for him.

(Cam and Michael - the sign on Cam's chest says "My Chest is Open")

The next few weeks we spent in and out of each hospital, hearing no positive progress about Cam, nightly and morning updates were pretty grim, with many “close calls” and phone calls to tell us to spend “quality time” with our little man, and of course the feeding and growing with Michael.

Cam had quite a few ups and downs, an infection that entered through the IV sites, and attacked his lungs, bleeding in the sac his heart lay, a brush with Necrotizing enterocolitis (NEC), infections in his drains and an endless list of complications, and a few additional “quick” surgeries to fix or relieve any “issues” .

Some mornings after hearing he’d had a good night we’d enter the ICU room, not recognising our little man, as some new infection attacked his poor little body, ending in his body ballooning to tremendous proportions, and sending him tumbling back down from the recovery he was making. Whereas with Michael we were trying to get his weight up, Cam’s aim was to lose fluid and lose weight.

Meanwhile Michael was “discharged from PIN" after 28 days, and we began the express, deliver, and feed routine that became our lives for the next 6 weeks.

Milestones for us were being able to tend to Cam’s cares after a few weeks, him holding down at least 20 mls, holding him on the pillow at 5 weeks, along with his “additional bits attached”, and finally at 5 weeks being able to hold both boys in our arms skin to skin, which had the whole room crying!

We watched as babies and children came in to ICU and out again, quietly wishing it was our turn, and hoping and praying it would not be too long away. Finally when we thought we would be spending the next 6 weeks in ICU, following a particular bad update that week, Cam decided he’d had enough of renting the space and was moved on to the Ward. Yeah!

He spent the next week in the Ward and we learned about giving him his meds, trying to feed him (no way he reckoned!), and how to watch for sign of distress, CPR, cleaning his scars etc.

We were like scared mice, every prolonged alarm from the oxygen saturation machine, heightened our blood pressure, and a health scare of exposure of measles, made us feel a bit anxious, but eventually after a week and a half after being transferred back to TBH, it was felt that we would do better all of us going home and having visits from the community health nurse, Yay we were going home..

A usual pose for me in the morning (yes still in PJ's and all)

With a hiss and roar we were thrown in to the deep end. Reflux hit us with a whump, 4 hourly bolus feeds for Cam saw us living by the alarm clock, my husband and I became ships passing in the night, and life became a blur of hospital visits, speech language therapists visits, and community health nurse visits, and ongoing replacements of Cam’s NG tube, then Plunket for Michael.

I was too frightened to go anywhere with the boys with Cam’s immunity levels being really low, with being prem, and of course as a result of his knocks during his first few weeks. I craved normality though, and looked forward to the visits from the medical professionals to feed on normal everyday stuff. Sometimes I sat there thinking where on earth am I?

At 3 months we had a slight hiccup as Cam went in to Congestive Heart Failure, and we were airlifted to Greenlane hospital. Cameron had out grown the shunt which had been created in the first stage of surgery and he was booked in for surgery the next week, and it all went smoothly. We were home within the week, and on life went, as normally as we could.

All through this Cam and Michael’s reached all of their incredible milestones, with Cam only trailing slightly by a couple of months or sometimes no difference at all with his brother. Each milestone was celebrated for both Michael and Cam, although probably a few more tears were shed from me when Cam’s were reached.

During all this time it seems I was suffering from undiagnosed PND, and this became overwhelming when the boys turned 18 months, and I was finally able to get help from Maternal Mental Health, even though I was outside the “set parameters” of 12 months. Following a referral for Anxiety with Adjustment Disorder, I was referred to a therapist through the Hawera team, due to the huge waiting list with the NP team, and their help throughout has been amazing.

Cam after his "extra arteries" had been coiled - April 2004

Cam has had a few additional procedures to “fix” a few extra arteries which were affecting the circulation of his blood and adding pressure to his heart and a slight problem that his artery to his lung was narrow, and this would affect his oxygen levels … Still he battled on and in fact turned in to something quite like an energizer bunny … no stopping the two of them!

In March 2 years ago, our little girl entered the world, and we were thrown in the deep end again. I’d never had a baby come straight home before and I poured over parenting books, to find out tips, but in the end threw them all back in the cupboard after friends helped me to realise, life goes on and baby and you will sort it out. Unfortunately we found like her two brother’s that this little Miss has a congenital heart defect also, albeit a mild condition, which requires monitoring too.

When little Miss turned 5 weeks we got the call to go up to Starship with Cam for his 3rd stage repair. The surgery went very well, however his recovery all turned a bit pear shaped with a non-cardiac related complication and we found ourselves living life in Starship for the next 6 weeks, with a opaque looking little man, with little drains connected to him wherever he went. Little Miss just fitting in with the routine, and Michael spent some time away with my parents but others with us.

Again by some stroke of I don’t know what, when we were told Cam was either going in for surgery or a change of medications again and a further stay, Cam’s surprised us all and in 3 days we were home again, with him living on a non-fat diet, to help his body stop having to produce or process fat, and allowing the affected organs to recover. Within a few weeks he was back to normal, with higher oxygen levels in his blood, and his collapsed lung on the mend and onward bound to Kindergarten. *swoon* …

The boys slowly but surely gained confidence at Kindy, and are soon to be starting school. A huge milestone for any family, but a little extra special as many parents with children with special circumstances can understand.

This year we were told he has a “slight” hiccup where his heart is skipping beats, and that he is not allowed some certain medications, but this is not affecting him in any way, it is just something that we are mindful of.

This little man has faced uncertainty, surpassed odds, and come out the other side cheeky, semi-balanced, full of fun and games and with an unbeatable gusto for life and all it brings.

I’m not ashamed to say that not one of us in our family have been affected in some way by this little man’s journey, and that I myself still find some days a bit like a roller coaster, depending on how “well” Cam is doing, but with the help of my family, close friends, my therapist and Cam’s professional’s we take things as the come, and hope in the future there will be some new medical discovery that will aid Cam to reach adolescence and maybe adulthood just like his brother.

The boys kindy photo for a calendar - Dec 2007

In the past few months Cam’s paediatrician, surgeon, and intensivist nurse have told me that they didn’t like to say but really didn’t think he would reach his 1st birthday, and how amazing it is for him to be turning 5. Don’t we know it!

His blood prick tests every few days (at the moment), his daily meds, and the “few” complications some of these have caused, still remind us of his ongoing battle, but to look at him you really would have no idea that this little boy has all that chaos going on inside of him, a “hidden” disability so to speak.

One of my favourite photos - Cam Sept 2007

Writing his story it all seems quite surreal and not real that this is what we have been through with this brave little man. It’s hard to put in words, and then not keep writing for pages long. I hope I haven’t made it all sound so flippant, and I know many may have been through similar or worse experiences, but hope this gives a little insight as to what our journey has been like.

Onwards we go, with the boys starting school visits shortly, and a new chapter will begin with them.

My two brave boys, Cam for all that he has been through and Michael for always being there beside Cam all along the way.

My brave little man - March 2008


Wherever you may wander .. I'll be right by your side
Cam and Michael - Sept 2007