Our Son Troy...
Lauren Kay-McDowell on her baby son Troy who was diagnosed in utero with Potters Syndrome
"He was our little Soldier who put up a fight to live the whole pregnancy and the short time he had on earth. "
At our 20 week scan we were told that our unborn baby Troy would hopefully just need an antibiotic when he was born to help his kidneys.
8 weeks later at 28 weeks I had another scan to be told both of his kidneys had stopped working.
This meant his lung development would be affected since the kidneys help to make amniotic fluid which babies drink. Troy wasn’t able to do this as his kidneys were both non-functioning and by 28 weeks I had only 2cm of amniotic fluid left around my baby. Normal measurements are between 10-12.
In January 17th 2019, my little soldier made his grand entrance at 35 weeks and 5 days. He cried and I got to hold him before he was rushed off to the NICU.
I remember everything so clearly.
I remember going down to see him in NICU and thinking he was by far the biggest baby in there, and that he was going to be ok.
This wasn't the case, we were taken into a room by two consultants and a neonatal nurse.
They explained that Troy wasn't going to make it. We knew we had to let him go, but before we did it was important to us that his big brother Tristan met him.
Me and my mam...
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
I read them both a book.
For an hour he breathed all by himself, I could feel him breathing and his little heart against mine.
At 25 hours old he passed away skin to skin on my chest.
The reason we gave him the name Troy was the meaning behind it 'soldier.'
He was our little Soldier who put up a fight the whole pregnancy and time he had on earth.
Forever in our hearts.
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Some conditions including POTTER'S SYNDROME, POTTER'S SEQUENCE and RENAL AGENESIS mean that a lack of kidneys or kidney development causes a decreased amount of amniotic fluid – which can also mean that the baby’s lungs fail to develop. It has tended to be associated with a very poor outcome but this is not invariably so, and a new treatment means the outlook may dramatically improve.
US Congresswoman Jamie Herrera Beutler was told that her daughter had Potter’s Syndrome and that “It’s 100 per cent fatal. She will either be stillborn, you’ll miscarry, or she will suffocate in your arms after she’s born”. But the Beutlers urged doctors to try an experimental treatment – injecting a small amount of saline into the womb to act as a substitute amniotic fluid.
Abigail Beutler, was born in July 2011, and is thriving, sitting up, chattering and playing with her adoring parents. She is awaiting a kidney transplant and her Dad, Dan Beutler, is a match. Abigail’s story may now change the treatment protocol for Potter Syndrome.