The size of a walnut

The news that Dr. Hobbins had detected a heart murmur was a bit of a surprise but there was no obvious sign of a heart problem and I was fairly optimistic that it would turn out to be a false alarm so the following day I went off to work as normal.
At around 11a.m I received a call from Colleen which confirmed my optimism had been misplaced. The echocardiogram had shown an anomaly and Sarah's doctor was on the phone to the specialist cardiac team at Guy's Hospital.  At that point I was unable to concentrate on anything and sat there waiting for more news. Around half an hour later I received a call from my sister-in-law telling me that Sarah and Colleen were in an ambulance on the way to Guy's.

In 2005 I was working in central London close to Tower Bridge and as soon as I received the call I was on my way to Guy's Hospital which was a brisk 15 minutes walk away.

Dr. Owen Miller, consultant in paediatric and fetal cardiology, performed another echocardiogram and gave us the diagnosis that Sarah had an interrupted aortic arch (IAA) and a large ventricular septal defect (VSD) which is more commonly know as a hole in the heart. She was experiencing heart failure and surgery was the only option. It was also mentioned that as many congenital heart defects are caused by genetic conditions it was advisable to do a blood test.

Around 50% of all babies with this type of IAA and VSD have 22q11.2 DS.

At that point there was little we could do but wait and contemplate the fact that our 17 week old baby was about to undergo major surgery. Around 48 hours after Sarah had been admitted to Guy's the medical team were discussing whether or or not to proceed with the operation as they thought Sarah may have had an infection which could cause complications. That afternoon we received the news the operation was going to take place the following morning.  I must admit we had mixed feelings as on the one hand we wanted the problem fixed as soon as possible but on the other we were apprehensive about the forthcoming surgery.

That evening we met Mr. Conal Austin the surgeon who was to perform the operation. He described in detail how he would undertake the repair and helped to ease the anxiety we were feeling at that time.

As a general rule of thumb the size of a person's heart is about the size of a fist. In the case of a 17 week old baby the heart is about the size of a walnut. I still find it unbelievable that life saving surgery can be successfully carried out on such a small object and we are very privileged in this country to have surgeons with the knowledge and skill to perform such intricate surgery.

After listening to what was about to take place I was asked to sign the consent form which included the potential risks associated with surgery of this nature including the 5% risk of death during the operation.

When thinking about risk human nature is to focus on the downside. However in such a situation my recommendation is to look at the risk equation from the other side and I told myself instead of a 5% risk of death look at it as a 95% chance of surviving which sounds much better.

Thursday 13th October  (Luckily I am not superstitious)

Sarah was scheduled to be the first operation of the day but due to an administrative mix up another patient went down to theatre first. This not only prolonged the agony for us but Sarah had not been fed since the previous night and was becoming quite agitated. At about 11a.m. we got the call to go, carrying Sarah down to theatre, and leaving her in the care of the surgical team was probably the worst thing I have ever had to do and the memory of this will live with me for ever.

The next few hours were the longest I have experienced, we took a walk along the South Bank and went for lunch but had little appetite.

Fortunately we had been offered a room at the local Ronald McDonald House which provides accommodation for families of seriously ill children and went back to the room to rest and wait. Around 3.30 p.m. we got the call to say Sarah was on her way to intensive care and we rushed back to the hospital to see her.  Although she was covered in tubes, drips and drains she had come through the surgery and Mr. Austin told us that the operation had gone well.

The body's powers of recovery are amazing and hour by hour we could see an improvement. Often we would go out to get something to eat or drink and when we got back to intensive care we found that another tube, drain or monitor had been removed.

Barely two days later we were back on a normal ward feeling confident that the worst was over.