Congenital Conditions and Lifelong Medical Records
It was an emotionally overwhelming moment when my son, all of 6 months, was diagnosed with a congenital heart condition. His paediatrician, who we visited for a routine follow up, suspected that there may be a Ventral Septal Defect (VSD), a hole between the chambers of his heart, which allowed oxygenated and de-oxygenated blood to mix.
We made the rounds of diagnostic labs for an echo-cardiogram and then of a no. of hospitals. We visited some of the best and most renowned paediatric cardiologist, hoping the hole was small enough to fill on its own as he grew up. However, that was not the case and surgery was recommended for my son and the suggestion was to not delay it for very long.
As surgery was the only option, we settled for it and fixed an appointment at a hospital where we felt comfortable with the team of paediatric cardiologist, the surgeon, and the facilities. This was back in 2004 when corporate hospitals in India were changing the way procedures, care and follow ups were managed. It was a very difference experience to what we had been used to. We just need to land up and get admitted all else was taken care by the hospital. It was surprising they had toys too for the baby.
My son was operated on when he was all of eight months. With the skill and knowledge of the able doctors and with gods grace the six-hour procedure went off well. He spent a few days for post-operative care first in the ICCU and then in the room in the hospital. He was discharged from the hospital after being there for about 10 day including the pre-operative and post-operative period.
When he was discharged, we were given a discharge summary and all notes. This was very detailed and ran into many pages. By then, we had a collection of diagnostic reports, opinions, and prescriptions from our visits to the doctors and hospitals. We had to go back to the hospital for follow up visits. Initially a couple of times a month and later after longer intervals. Once the doctors were confident, he had recovered well. We had to do annual visits to ensure all was well and there was no cause for any alarm. Each of these visits added to medical records – prescriptions, diagnostics reports, X-ray’s, EEG’s etc.
My son is now sixteen and a handful. We have safety stored all his medical records and discussed them with him too as he will possibly need to share these with any doctor he may have to visit. We have digitised the records by scanning them and storing them on the cloud. However, we are hoping to use a solution when available, that can store these records and give a dashboard and possibly alert a doctor my son may need to visit in future, on the fact he had a surgery when he was an infant and what possible issues he may need to be cognisant about. I am sure there are a number of smart people working to find the appropriate solution and we will have the right solution in the near feature.