February 3 2016

Day 2 – CHD Awareness Month

Yesterday was Day 2 of my CHD Awareness month campaign.

I apologise I didn’t get this one out yesterday, it has been heart wrenching to write.

Firstly, because I discuss what congenital heart disease is and the guilt and helplessness that I have about it and how it affects my family.

Secondly, one of the photo challenges for today is diagnosis.  I am sharing an image of what Bryce’s heart looked like at birth but I am telling the story of about how we found out about it.  I have shared the outline of the time with a number of people, I have never really told the whole story – this is my memory of that time.  I won’t say its accurate, I don’t have Brad’s version but this is how I remember it.  And as hard as it is for you to read, it has been a thousand times harder to write and millions of times harder to live it.


What is Congenital Heart Disease?What is Congenital Heart Disease?

These are heart defects that are present at birth.

They may occur in the walls of the heart, in the heart valves or in the arteries that transport the blood supply.

In most cases, there is no known cause for congenital heart disease, and statistics show that in only 20% of cases is there a genetic cause for the defect/disease.  Essentially, no one knows why or what causes these defects.

Bryce is one of the unknown cases.  No one can tell us how, why or what caused his heart defects and as his mother, I have blamed myself, felt guilty that something I did or didn’t do harmed my child before he was even born.

Yes, the doctors, nurses, social workers have all told me, repeatedly, that it was my fault, that I didn’t do anything, that ‘it just happened’ and that it ‘just happens’ in 1 in every 100 births.  But to be honest, that doesn’t help, if anything for a while it made harder for me.  I needed answers and I wasn’t getting them, not because the doctors didn’t tell me, but simply because they don’t know.  They can say all they want that it ‘just happens’ and isn’t my fault but if they don’t know why or how it happens – how do they truly know it wasn’t my fault?  To me the answer is simple – they don’t.  And I have to live with that. Bryce has to live with that. My family has to live with that.

It has taken me a long time to accept that as far as the professionals know I didn’t do anything to cause this harm to Bryce.  To accept that they simply don’t know.  I have accepted that now, but it doesn’t mean I don’t feel guilty.  Guilt is always there in the back of my mind – sometimes it’s so strong I want to hide, to run away.  But I don’t, I take a deep breath, I might scream, shout and rage, but eventually my strength returns and I continue the fight to keep my child healthy and safe, I take him to doctor appointments, to physiotherapy appointments, spend money to see he gets the best care we can afford so he will live a long, happy, quality life.

I can’t speak for Brad, my husband, I can only imagine what he feels and thinks – I often think it is harder for him at times.  He is not the sort of person to scream and shout, that’s me – the world knows what I think, so it’s hard to know sometimes.  He works hard to provide for us so we have a nice home, so Bryce can have the medical care needs and so I don’t have to work so I can be available when Bryce is sick or sent home from school because he is unwell.

That is how congenital heart defects affects my family.  HOW DOES IT AFFECT YOUR FAMILY?


2016 Sweetheart Day Photo Challenge Day 2 - Heart Shape

2016 Sweetheart Day Photo Challenge

Day 2 – Heart Shape

This is my heart warrior holding a heart-shaped pillow he gave me for Mother’s Day.

 

 

 

 

 


 

 

2016 HeartKids Awareness Photo Challenge Day 2 - Diagnosis2016 HeartKids Awareness Month Photo Challenge

Day 2 – Diagnosis

This image was created for me by Heart Baby Home, who has numerous images of CHDs, repairs, and the like to help explain why our CHD are different.

This is a visualisation of what Bryce’s heart looked like when it was born.  I have spent the best nearly 9 years trying to explain to people what his defects are while only just understanding them myself.  I wish I had of had this done when he was diagnosed – it would have made the best 9 years a little easier.

While I can not remember the dates, the story of Bryce’s diagnosis will live with me for the rest of my life.  Brad and I were up at the local hospital to have our 18 week scan.  We were still getting used to the idea of being pregnant and having a baby, still getting over the shock of it.  Because I am an overweight person, our previous scans had been difficult as the stenographer had problems getting decent pictures of the baby.  This appointment was no different, the lady commented several times how hard it was.  At one point, she said something like ‘I’m having problems getting decent pictures, I need to speak with your doctor.’  Then she left, she came back about 20 minutes later and said that because of the difficulty of getting good, they had decided to send me to Brisbane to get better scans on their better equipment, and then told us that it was nothing to be concerned about, just wanting to be sure, and that the doctor would speak with us at our antenatal clinic a couple of days later.  We weren’t too concerned, we were assured we had nothing to worry about.

At our antenatal appointment a few days, we waited hours and hours and hours to see the doctor and midwife.  After seeing the waiting room fill and empty several times (they were all there for antenatal clinics), we asked what was happening and why we were waiting to so long, to be told that we had been put on the special list which meant that we had to see the doctor and the midwife and needed longer for both appointments, and therefore had to wait longer than normal as a result.  We were not happy but there was nothing we could do about it – so we waited.

Eventually we saw the midwife, had all the checkups, questions, etc that you go through for these things.  We were then taken to the doctor who did his own exam and then confirmed that we would be sent to Brisbane for better scans because they had problems getting images of the baby because of me being overweight and the baby was in an awkward spot.  He did mention, in passing, that a cardiologist would be on standby.  We queried this and were told that it was just procedure because this is the heart scan and the cardiologist is on standby in case the scans show a problem.  We asked, again, was there something wrong, should we be concerned, is there a problem?  Again we were told no, that it was all just procedure, nothing to worry about.

Because our appointment in Brisbane was on the Thursday, we decided to make a long weekend of it and catch up with our friends and old work colleagues, there was HUMBUG on and it would be like a last holiday before the baby was born.  We arranged dinners, catchup and the like – we were in a good frame of mind.

On the Thursday, we arrived in Brisbane, found our way to the Hospital, where we were met by a lovely midwife who had us complete a bunch of paperwork, including a medicare form for a cardiologist.  We were surprised by this, and I remember saying to her that we were told that the cardiologist was only on standby and that we were told this was just a routine ultrasound to get better images of the baby.  She replied that no, the cardiologist would be the one doing the ultrasound.  At this point, we were confused and did not know what was going on.

We went into the sonar room, I laid on the bed, the technician introduced herself and told us that we had to wait for the cardiologist to arrive.  When he arrived he introduced himself quickly, and started to direct the technician as what images he wanted, what angles, all technical stuff.  I don’t know how long it went for, but it felt like I was laying a long time being prodded and geled and not being told anything.  At the end, he told us that the midwife would take us to the “counselling room” so we could have a talk.  By now, we were even more confused and becoming very worried and anxious – we still didn’t know what was going on.

When we sat down with the doctor and the midwife, he asked us what we had been told about why we were in Brisbane.  We told him about the problems the hospital had been having getting pictures of the baby and that they had sent us to Brisbane to get better images on better equipment.  To this day, I really don’t think he was listening to us, or heard what we said, because he next words were “Well, it’s what Rockhampton thought.”  And proceeded to show us a letter from our hospital in which they state that they believed the baby had a heart defect called Hypoplastic Right Heart Syndrome.   It still meant nothing to us, I remember thinking, they lied to us, they told us it was ‘routine’, that there was nothing wrong, but they lied.

I think the midwife realised that we still had no idea what they were talking about and eventually the doctor explained about heart defects and what that meant for us and the baby.  Some of that is a blurred, I think in my shock I have chosen to forget some of it.  I remember crying, a lot, I remember them telling us that the baby would have to have surgery within two weeks of being born and I remember being told that we would have to come down to Brisbane at 35 weeks to have the baby there.

We were escorted out of the hospital, still very upset, confused, dazed and just wanting to be home.  We walked down to the bus stop in silence, just holding hands saying nothing.  I had decided very early on that didn’t want to know the sex of the baby, that I wanted it to be a surprise.  Whilst we were waiting at the bus stop, I remember talking to Brad about whether or not we wanted to find out the sex of the baby, in case it died, but we agreed not to because we now knew too much about the baby and maybe it would be nice to keep it a surprise.

We went to the Mall because that’s what we had decided to do that morning before all this had happened and we really didn’t know what to do.  We found ourselves in a food court, not eating what we had just bought and thinking about the phone calls we had to make to our family to tell them.  Brad called his parents and I called my dad.  I don’t know how Brad’s call went or what he said, but the first words out of my mouth were “Dad, there’s something wrong with the baby.”  I can’t remember the rest of the conversation, or the other two after that (my mum and my grandmother), I honestly don’t want to remember, they were the hardest, most horrible calls I have ever had to make.  No one should have to make a call like that.

 


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Posted 3 February 2016 by Kawani in category "Congenital Heart Disease (CHD)", "Family

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