The X Man - Our Journey With HLHS (Hypoplastic Left Heart Syndrome)
I am creating this blog to tell our story of our little X Man who has recently been diagnosed with HLHS (Hypoplastic Left Heart Syndrome). It is my hope that our story will help others, as well as myself, who are also facing the birth of a child with HLHS, to understand exactly what HLHS is and the journey that is now ahead of us.
Who Are We?
I am 38 (actually, today is my birthday), Mum is 36 and we have a beautiful boy, Mr Two, who is absolutely awesome. We are not a special family in any way. Mum and I met 5 years ago. We both knew straight away that we would be spending the rest of our lives together and we married exactly 12 months later. We spoke about children and we both agreed that we would like to have two a couple of years apart. Mum got pregnant in 2011 and we had our first child in 2012. Mum did have Gestational Diabetes throughout the pregnancy which was able to be managed by diet, and Mum also had what is known as Irritable Uterus (http://www.irritable-uterus.com/), however, Mr Two came along with only a few minor issues but an otherwise normal pregnancy and birth. He has been as healthy as any child, I just wish he would slow down!!!
A Brother or Sister for Mr Two
Mum and I decided the timing was right for us as a family to try for a brother or sister for Mr Two. We stopped our birth control and got down to business. Amazingly it looked as though we had hit the bulls eye straight up. When Mum's period didn't come on time we did a home pregnancy test and the result came back as positive. Be booked in to see our GP to have it confirmed only to be told that the result was negative. We waited nearly another two weeks until finally Mum's period came around.
Round 2 and the weeks rolled by and because things were not happening like clockwork for Mum like they normally did, it was me who actually realised that Mum was once again late, so we did another test and guess what? Positive, again. Again we went off to the doctors, however, this time they were able to confirm that we were in fact pregnant! Needless to say Mum and I were ecstatic! I did some calculations and came up with a due date of 31/07/14.
Early Days
Mum started on her multivitamins straight away and everything was progressing well. At about 6-7 weeks Mum experienced some very minor spotting, so minor that we didn;t even go to see our GP about it, although we did mention it to her at our next appointment. We then went back to see our GP at about 11 weeks for a regular check up. She checked out Mum and everything was fine, she then tried to listen to X Man's heartbeat but was not able to find it. She put this down to how early the pregnancy was and asked that we come back the next week so she can try again, believing that X Man will have moved into a position where the heartbeat could be found. We went back the following week and again our GP was not able to find the heartbeat. As we had chosen not to have the 12 week Nuchal Translucency test (to check for Down Syndrome - we would have continued with the pregnancy regardless), it was suggested that we have an Ultrasound to ensure everything is ok.
We had our Ultrasound in week 13 and straight away the Radiologist was able to see the heartbeat. Although we were confident everything was ok it was a relief to us both to see that little flutter on the screen. The rest of the Ultrasound went fine, all measurements looked normal and the due date provided by the Radiologist was 1/8/14, pretty much bang on what I had calculated. Obviously the detection of the heartbeat also was a relief to our GP.
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| 13 Week Scan |
A Scary Moment
Week 18 and everything seemed to be progressing nicely. Mum came home from work one evening and said she had some abdominal pain which had been hanging around for a number of hours through the day. Mum then discovered some bleeding which she described as similar to the bleeding at the start of a normal period. The next potty stop there was not so much any more bleeding but there was still signs of bllod in the urine. We called the advise line at the hospital and explained what was happening and they said to come straight down. Grandparents thrown into action to look after Mr Two, off we went to the hospital.
The hospital did all the test you would expect, blood, urine, etc, etc... They also did an Ultrasound, but only using a rudimentary portable system which did not have a high resolution, but was enough to observe X Man and to ensure that everything was right inside, which it all appeared to be. They also did a physical exam on Mum to check the Cervix, again all ok. As there was no indication as to what caused the bleeding and the staff at the hospital we confident that everything was ok, they sent us home.
The next morning we had a scheduled appointment with the Doctor at the hospital. We explained the events of the night before and the Doctor did an examination of Mum (blood pressure, etc, etc...) and also did another Ultrasound using the same system as was used the night before. This time the Doctor was able to observe what he believed to be evidence of a blood clot that had been behind the placenta and this led the Doctor to believe that this was the source of the bleeding the previous night. He said that while it would be preferred if this event had not happened there should be no negative effects on X Man or Mum. The Doctor also believed he was able to see a little willy
The News No-One Wants To Hear
Week 20, Ultrasound time! Both Mum and I were excited because we were going to find out if Mr Two was getting a brother or sister, well, find out for sure (we already sort of knew from our hospital visit last week). We didn't find out if Mr Two was going to be a boy or a girl and it was a wonderful surprise, but with a shed full of baby boy clothes we wanted to know for X Man just in case he was a she so that we could prepare.
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| It's A Boy!!! |
Straight away the Radiologist was able to confirm X Man was indeed a little man. Both Mum and I were very happy and excited with this news (although we would have been just as happy and excited if it was a little girl). The Ultrasound continued, measurements were taken, the air in the room was light and happy. Every time the Radiologist went to look at X Man's heart she was not able to see what she wanted to see. Oblivious to what was coming both Mum and I believed at the time that it was simply because X Man was running laps around the womb. We continued to chat with the Radiologist and a question was asked by Mum about what would they do if they did see anything wrong with the baby. The Radiologist said they would get their Doctor to come in and confirm what the Radiologist has seen and then send the results to the patients GP to discuss directly with the patient. The Radiology Doctor would only discuss things with the patient having the scan if there was a serious condition found.
The Radiologist kept on trying to view the heart but was not having any success (or so we believed). She said she would like the Doctor to come in and see if she could have any more luck. A few moments later the Doctor came in and introduced herself and began to observe the scans, all the while talking technical with the Radiologist.
Once the Doctor and the Radiologist had finished the Doctor advised Mum and I that they had observed an anomaly with the heart. We were told that the heart had not developed properly and that we would need to have more detailed scans done at the Mater Hospital to determine the extent of the anomaly. The Doctor wanted to call our GP that day, however, being a Friday our GP was not available as she does not work on Fridays. As this was the case, the Doctor said that she herself would send the referral through to the Mater and would contact our GP on Monday to discuss he findings directly.
It is needless to say that both Mum and I felt shocked and were quite emotional. It was going to be a long weekend...
The Results
It was a long weekend...
Monday afternoon we went off to see our GP. We were told that X Man had Hypoplastic Left Heart Syndrome. Hypoplastic was explained to us as being small and that it being the left side of the heart that it restricts the ability of the heart to pump oxygenated blood through the body. We were told that there would need to be surgeries to rectify the workings of the heart. I asked about survival rate and the numbers suggest around 80% and that this has grown from 0% only 20 years ago.
Our GP had contacted the Mater and they confirmed that they had received the referral and that it was in "Triage" (our GP believed that this means in line to be processed). We discussed with our GP that as care would need to be given to X Man when he is born at the Mater that we would like to change hospitals (we were scheduled to have X Man at Logan Hospital where Mt Two was born). We now had to wait to be contacted by the Mater as to when we needed to go for the next scan.
Our GP had contacted the Mater and they confirmed that they had received the referral and that it was in "Triage" (our GP believed that this means in line to be processed). We discussed with our GP that as care would need to be given to X Man when he is born at the Mater that we would like to change hospitals (we were scheduled to have X Man at Logan Hospital where Mt Two was born). We now had to wait to be contacted by the Mater as to when we needed to go for the next scan.
Tuesday Morning Mum received a phone call from the Mater to say we needed to see them the following Tuesday afternoon for the scan. It is going to be a long week...
Understanding HLHS (Hypoplastic Left Heart Syndrome)
Now that a name had been given to X Man's condition, I started doing some research on HLHS. By far the best information I have found has been from the The Royal Children's Hospital Melbourne. The information they provide clearly explains what HLHS is and what surgeries are required in order for survival. Whilst there are many many more resources available, these two links gave me clear and concise information and a clear understanding of our journey ahead.
What Next?
We wait until Tuesday afternoon, have the scan, speak to the staff at the hospital and identify what happens from here. Hopefully the information we receive will give us some more clarity on our road ahead and allow us to relax a little. In the meantime, our list of questions grows...
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