D Day 1 (Diagnosis of Heart Condition)

27 years ago on 20th May we relocated away from my family and friends for work commitments.

23 years ago on 20th May Bernard started a new job in London. Also 23 years ago on 20th May was the first day of the annual Chelsea flower show, in London. Most significantly on 20th May 23 years ago our precious baby son was diagnosed with a complex cardiac condition that would require several major surgeries (and many minor procedures) to stabilise his condition.

That day has left a permanent scar in my mind. Every year without fail the memories unintentionally come flooding back. I don’t like to dwell on past bad experiences and always try to adopt a positive outlook but that diagnosis has shaped our lives to where we are today, so how can I not remember it?

It was a lovely sunny day on 20 May 1998. I took Harrison down to the baby weighing clinic as I usually did a couple of times a week. These appointments were scheduled because at 4 months of age there was still some concern about his weight gain. We’d been at the GP’s surgery the previous afternoon and were told that Harrison had yet another virus. Our baby had seen the doctor more in his first four months than I ever had in my whole life! As I mentioned yesterday, my gut instinct was that something wasn't right with him but so far the doctors weren't concerned. Today, Harrison decided to change that. Whilst he was lying on the changing mat waiting for his turn on the communal weighing scales the health visitor wandered over to us. Being the sociable little chap he is, Harrison got very excited to see her and started kicking his legs. At the same time he turned a deep shade of purple. The health visitor commented on his colour and I told her not to worry because he often had these turns. At this point she scooped him up and told me to follow her to the GP's room. She had a brief chat alone with the locum GP, then Harrison and I went in and he was examined. The GP told me that he thought Harrison had gastro-oesophagealreflux and that he was going to give me a letter to take straight to the local children’s ward so that they could have a look at him. I mentioned that I’d take him up later that day because we had plans. He told me that they were already waiting for us, so I assumed that he’d booked us a timed appointment like you do to see the GP. He also told me not to go home to collect any of Harrison’s prescribed (Nutramigen) milk but I was in a real quandary because he wasn’t putting on sufficient weight and the health visitor had impressed on me how important it was to get as many millilitres as possible into him. I expected that we’d have a long wait to be seen at the hospital so I did quickly pop home and was glad that I did! At this stage I wasn’t at all concerned about the reflux that Harrison might have. He'd been having difficulty feeding; crying and spitting up but he was already on Infacol (for colic relief). It seemed a bit strange to be going to the hospital about reflux but for some reason I didn’t feel the need to question it.

When we arrived at the hospital (we’d lived in the town for four years and I only vaguely knew where it was) we took the lift to the children’s ward on 6th floor.

As we entered the ward a couple of nurses met us and checked that we were who they thought we were. They ushered Harrison straight into an assessment room. We had bypassed the waiting area so I thought that my popping home must have made us late! There were four medical staff in the room including the registrar. They immediately stripped Harrison down to his nappy, which I did think was a bit odd for reflux and laid him on the bed. The stethoscope and oxygen saturations (O2 sats) monitor were swiftly put into action but there was a problem because the O2 sats monitor didn’t appear to be working. Another was sought but this one also seemed to have started malfunctioning. The registrar decided to check his own saturations with it and quickly realised that there weren’t any problems with the equipment – it was my son who was causing the abnormal readings.

The amount of oxygen in his blood (O2 sats) was around mid-70% where the norm is between 95% – 100%. In a usually healthy person, if their O2 sats dropped to 90% they could feel quite unwell.

The registrar quickly wrote up an x-ray request form and within a few minutes of arriving in the assessment unit, Harrison and I were on our way down to the x-ray department with an auxiliary nurse. The x-ray showed that Harrison’s heart was a boot shape and along with the sounds through the stethoscope and the O2 sats machine readings, the registrar had skilfully put the puzzle pieces together and accurately diagnosed Harrison’s condition (although we only learned this a couple of weeks later). With diagnosis made, the next step was for Harrison to be hooked up to monitoring equipment and kept a close eye on until an ambulance could transfer him to The Royal Brompton Hospital in Chelsea, London (hence the reference to the flower show earlier) for a proper examination by the cardiac experts.

At this point we were introduced to our nurse for the day. An incredible nurse who happened to specialise in oxygen dependent children. We had no idea then how much we would need her expertise over the next few years.

Everything still seemed like a dream to me. It’s really hard to explain but I didn’t feel anything at all. I didn’t feel upset, I wasn’t relieved that Harrison’s health problems finally had a cause – I think I was in total shock. 

By now Bernard would have been approximately three hours into his new job. I couldn’t get hold of him because he had no phone signal and I wouldn’t know the landline phone number until later on that evening.

The nursing team asked me if there was anybody else they could contact for me. I didn’t want to worry my parents (who lived over an hour's car journey away) until we knew what we were dealing with. Harrison was their only grandchild and I know that they would have been very upset and worried not just about him but me as well. They would have immediately come up to the hospital to support me but I was worried about them driving up the motorway in the same state of shock as me. I didn’t think that I could have held it together if I had seen them on that day.

When Bernard and I moved four years previously, we hadn’t picked a completely random location. Apart from being close to a great transport network, his eldest brother and family lived in the town. My sister-in-law was called and dropped everything to be with us at the hospital. I can’t thank her enough for all the support she’s given to us as a family despite her own significant health problems. It turns out that we couldn’t have chosen a better area to relocate to; the medical and social support that we’ve received from the NHS and friends and family has been extraordinary.

At 5pm we were still waiting to be transferred to London and by the time we were ready to leave, rush hour was well underway. Fortunately we’d managed to get hold of Bernard and he said that he’d meet us at the Royal Brompton.

Harrison had to be strapped to a bed for the duration of the journey but it didn’t worry him at all. He was thoroughly enjoying his ride - he had a huge grin on his face and whenever anybody paid him any attention he would kick his legs enthusiastically. We (our nurse, my sister-in-law and I) on the other hand were being thrown all over the back of the ambulance! We arrived at the Royal Brompton at around 7:30pm.

Because it was so late, the day time diagnostic areas were all closed down for the night so we were directed to the treatment rooms on the children’s ward.

Entering Rose ward it struck me that everybody looked happy – staff, parents and children. I couldn’t comprehend how families affected by such a devastating condition could be happy! The heart is a person’s engine and if it’s not working properly, surely that’s a real concern? Over the years I too became one of those happy parents.

Following a detailed echocardiogram (echo) scan, Harrison’s cardiac condition was diagnosed as pulmonary atresia, a large ventricular septal defect (VSD), major aortopulmonary collateral arteries (MAPCAs), pulmonary stenosis and right sided aortic arch. A condition that had Harrison been born five years previously, would not have been treatable. This was exactly what the registrar at our local hospital had suspected and had correctly diagnosed without the need for expensive equipment. What a clever man! We had complete trust in him and the rest of our local team; the care they gave Harrison for the 18 years he was with them has been exemplary. I can’t sing their praises highly enough! 

The Royal Brompton cardiologist told us that Harrison would need several elective (planned) surgeries over the years to manage his condition but currently he was stable so we were to take him home and enjoy him until he deteriorated enough for his first surgery. This was a terrifying prospect for me. How could I enjoy time with my sick baby without looking constantly for signs of deterioration? This was when it finally hit me that our lives had been turned upside down and the future that we had planned for our family may never be realised. From that point onward Harrison was ‘in the system’ and his needs were completely taken care of. I'll discuss Harrison's heart condition in a separate post later.

We're still in touch with Harrison's health visitor and we'll always be thankful that she was so observant and reactive. She's moved away and retired now but she visits at least a couple of times a year. She always has been and always will be a part of our lives. As far as we're concerned, she's family.

With Harrison aged around 3 or 4 years

Together at Harrison's 18th birthday party

Glossary:

Cardiologist: A doctor who diagnoses, assesses and treats patients with diseases and defects of the heart and blood vessels (the cardiovascular system).

Echocardiogram (echo): An echocardiogram, also known as an echo, is a non-invasive scan that checks the structure of your heart and how well it’s working. It uses sound waves (ultrasound) to create moving images. It’s similar to ultrasound scanning used in pregnancy. An echo can be used to diagnose and monitor heart problems.

Gastro-oesophagealreflux: When a mixture of food, drink and acid travels back up the foodpipe, instead of passing through to the large and small intestines. As the food and drink is mixed with acid from the stomach, it can irritate the lining of the foodpipe, making it sore. 

Oxygen Saturations (SpO2): Blood oxygen saturation is the amount of oxygen within a blood cell. The higher the levels of blood cell oxygen saturation the easier it is to breathe. The abbreviation ‘SpO2’ stands for ‘saturation of peripheral oxygen’.