Genetic Consultants Baffled by Harriet’s Condition Four Years On

March 26, 2014

It is nearly four years since Harriet was last seen by the genetics consultant, Dr. Mohnish Suri, and his team at the Nottingham City Hospital. Back then, we thought genetic counseling was simply talking about living with a child that had some unknown genetic or undiagnosed condition, but we quickly realized this was not the case.

It was March 22nd 2010- Dr. Suri and his team had looked at all the data collected from countless blood tests, MRI scans and Chromosomes tests, to name but a few, but nothing really gave them any clues as to what Harriet was suffering from.

We told Dr. Suri that Harriet’s three brothers and one sister at the time Harriet was born had not suffered from any disabilities or had developed any form of genetic mutation or deterioration. We had also looked further down the family tree on both sides of the family and we were unable to find any members that had suffered the extreme disabilities that Harriet had from birth.

Having seen Harriet deteriorate so quickly since she was born and trying to adjust to living with a child that had so many disabilities was extremely hard to comprehend and one thing we felt very strongly about was stem cells. We told Dr. Suri that Lesley was pregnant, our intention was to harvest the blood core stem cells and place these into a bio bank storage facility, until such time we could find someone to transplant them into Harriet.

Dr. Suri told us that there was a possibility we could have another child like Harriet, there were no tests to check for what Harriet had, as he himself did not know what was wrong with Harriet and gave us a 10–15 percent chance of having another child like Harriet.

We were both taken aback by his comments, but this was not going to change how strongly we felt about collecting the stem cells, in order to try and save Harriet’s life.

One thing the meeting did highlight, was the extreme scoliosis or curve in Harriet’s spine, Dr. Suri was extremely concerned by this and had referred Harriet to see the brilliant spinal surgeon Dr. Michael Grevitt.

This referral proved to be key to Harriet’s survival, as we found out from Dr. Grevitt that Harriet’s scoliosis was life threatening, as it was not only crushing down onto her lungs, but also crushing her heart.

Read more here.

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