Lily’s blog

The Masters is on television and Denis is busy keeping all three Irish competitors company in Augusta (on TV!). For the past few years when the Masters comes round, it brings me straight back to five years ago when we spent six weeks in the US at Masters time, when Tommy had surgery.  Then we closely watched as Phil Mickelson went on to claim his first Green jacket.

‘Our son and we his parents had always been very well supported in the Irish healthcare system. We enjoyed an excellent working relationship with the professionals we encountered. When our son’s orthopaedic consultant felt that he needed surgery, his parents decided to seek the opinion of Dr. Gage. (a world renowned orthopaedic surgeon in CP). When the decision was made to have surgery in the US (and therefore not in Republic of Ireland), it was a difficult time for us. We felt alone as parents in our decision to take our son for surgery in the US.

The entire hospital experience in the US was excellent. The service was very child centred but the whole family was very well supported. We were impressed with the sheer professionalism and efficiency of all aspects of the SEMLS process at Gillette Childrens Healthcare Speciality (GCSH) (hospital where Tommy had his surgery) yet the services were delivered by caring and kind professionals. One could sense that SEMLS, though a serious procedure, was nevertheless routine at GCSH. One could sense that the whole SEMLS process was one that had been perfected over the years but still underwent continuous improvement.

As a parent I felt honoured to have Dr. Gage perform surgery on my child. I had such confidence in Dr. Gage that I never worried at all during the operation. This confidence came: from meeting with Dr. Gage, from reading his published work, from his international reputation, from his profound respect for children with CP evident both in conversation and in his writing and finally from his honest admission that in the past orthopaedic surgery hadn’t always served children with CP well.

The whole hospital experience was made easier for our child by distraction. He had received the complete set of James Bond DVDs (probably totally unsuitable for a nine-year-old), but which he was not allowed to look at until he hit the hospital. The hospital visit couldn’t come fast enough for him. In fact the only worry he had about the morning of the operation was whether he would have enough time to see a full film before the operation. Without James Bond on board, I feel the hospital experience would not have been as easy for my son.

Great thought had been given to all aspects of the process to make the child and parent’s experience as easy and as comfortable as possible. A parent could stay at night in the child’s room, sleeping in a pull out bed. Good facilities to shower and eat were present for parents. These are small things but helped enormously while a parent stayed at the hospital.

Though the child had been through a tough operation, the rehabilitation began almost immediately. A lot was expected of both the child and parent. Indeed even on a recreational level, our son attended an ‘arts and crafts’ class at the hospital with other patients on the night following surgery. I treasure the picture frame he made that night.

Each day in hospital in the US was very expensive. Our son was scheduled for surgery on Tuesday, was admitted to hospital at 6am on the morning of surgery. The SEMLS process was designed such that the child having had surgery on Tuesday would be out of hospital by Friday, therefore only incurring an accommodation bill of only three days. Our son in fact had to stay an extra night because of difficulties with transferring to oral medication.

We left the hospital on Saturday pm and took our son to the hotel. We went from one extreme of every need being so well taken care of to the other of being totally alone with a child who had major surgery 4 days previously. I felt nervous and daunted by the prospect and really hoped we would be able to do this. We weren’t helped by the fact that our son refused to take any of the medication, which had been prescribed, (pain killers, sedatives). As a mother I could not have coped alone without the support of my husband. We worked out a rota between us and I did the days and my husband sang our son through the pain at night. Watching James Bond DVD’s (even in the middle of the night) became a major part of our pain-relieving arsenal.

For the first three weeks after surgery we had a daily exercise programme to do. There was a big advantage in being away from home in that we didn’t have the normal daily tasks of running a home and family and work commitments. At that time we were able to totally devote our time to our son’s care. We had a number of hospital appointments between three and five weeks after surgery which helped a lot. We left for home at 5 weeks after surgery, with a programme of exercises from our son’s American Chartered Physical Therapist and a plan for transition from one set of orthotics to the next.

Our son was now under the care of his Community Physiotherapist who was very interested and helpful and totally committed to our son’s rehabilitation. SEMLS was an expensive process in terms of time. It helped that I was free from work commitments for the long rehabilitation process. At all times throughout the SEMLS process we were extremely lucky that our son was a very cooperative child in carrying out his programme. He worked extremely hard and with good humour. I always had a reward system in place, e.g., a book, an audio book or DVD for a well completed week.

The initial rehab at home went well. Our son worked well with his programme and we had regular visits from his Community Physiotherapist. In hindsight I feel that since rehabilitation is so critical to the overall outcome of SEMLS, and because many children are rehabilitated away from the tertiary centre at which surgery is performed, more detail on the rehabilitation process would be invaluable: what is the optimal strengthening programme, indications as to how soon one would expect different milestones to be reached; troubleshooting strategies for use if problems persist beyond what would be expected. A physiotherapist may never before have rehabilitated a child following SEMLS.  In hindsight I was sorry not to have stayed in the US for longer after surgery to get further down the rehabilitation path under the direct supervision of GCSH. If I was repeating the whole process, I would not bring the child home until 12 weeks post surgery. (To make staying in the US for such a long period more cost effective, I would recommend renting a house for the period. A house would also have given more living space than a hotel room).

In November 2004 (following surgery in March), we met Dr. Gage in Oswestry in Wales. I was delighted that he was pleased with X’s (Tommy’s) progress. It allayed the fears we had had re the progress of rehabilitation. Meeting Dr. Gage in the UK, was one of many examples of Dr. Gage putting himself in parents shoes and trying to minimise the costs to us, e.g., making time in his schedule to meet us while in Wales for a post-operative visit rather than us coming to the US.

Dr. Gage recommended plate removal in Dublin. The hospital experience in Dublin contrasted with that in the US in a number of ways. Whilst the professionals in the Republic of Ireland were excellent and very caring, systems were not as efficient and facilities were not as good.  A few examples will serve to illustrate:

·      Surgery in the US was confirmed many months in advance. Surgery in Dublin was confirmed the evening before. Confirmation came at 5pm that a bed and nurses were available so surgery could proceed the next day. We then had to get organised and set off for Dublin on a dark and wet January evening, a two and a half hour trip. This was difficult in terms of preparing a child psychologically for surgery but also in terms of family logistics.

·      In Dublin, the child was required to come to the hospital on the eve of surgery in order to prepare the child for surgery, (including ensuing that the child was fasting from midnight). In the US, bringing a child in on the morning of major surgery was the norm, with parents responsible for overseeing preparation.

·      For a six hour SEMLS, X (Tommy) stayed four nights in hospital, a night longer than normal and what was scheduled. For a simple twenty minute plate removal procedure, X stayed four nights in hospital which was the minimum stay after the procedure.

·      As a parent I slept in a pull out bed in X’s own room in GCSH. In Dublin, I slept on a mattress on the floor, in a crowded ward with other parents in similar situations. This was in a national childrens’ hospitals in Dublin.

The whole experience was a big adventure for us. Though it was hard in many respects, we still enjoyed lots of aspects of it. The hotel staff became like family to us. It was tough leaving his two older siblings behind yet, in many ways, they seemed to have grown up in our absence. Many people felt sorry for us, but we never once felt sorry for ourselves. Dr. Gage is a worldwide expert in the field of orthopedic surgery in CP, yet he cared so well for our son and for us that I felt humbled by the whole experience. It provided me with a number of valuable life lessons.

Overall, I feel our child was very fortunate to have been able to access SEMLS. As parents, we felt a huge responsibility on our shoulders taking our child outside the country for surgery. My research on funding has informed me that had we had Irish consultant support for SEMLS, we would not have had to pay the (high) costs involved. X benefited enormously from SEMLS in the USA and we continue to see improvement. We would repeat the process without hesitation. However I acknowledge that we had the money, time (for SEMLS and rehabilitation), had support for minding our other children at home in our absence, and had the educational background to research SEMLS. The above, which I consider luxuries may not be affordable to all. I hope in some small way this thesis promotes debate/discussion on SEMLS with published outcomes being available in the Republic of Ireland.

For our son, the two James’s - Bond and Gage compete for main character role in his recollections of SEMLS and I’m not sure if sometimes Mall of America doesn’t get confused with GCSH as the venue where all the action took place!’

So now when the Masters is on TV, I am often back in that hotel room in Minneapolis. I am enormously grateful for the good movement Tommy has to this day. Tommy is a lucky boy but he deserves every bit of his luck. And though we approached the surgery from a scientific perspective, I often think of the words of the song ‘The Touch Of The Masters Hand’. I feel Dr. Gage is the true Master though I'm not sure what  the most appropriate colour for his jacket would be ...

The PS to this story, is that we are due back in Minneapolis for Tommy’s review with Dr. Gage this August.