I had a son, Dillon, on 22 June 1991 he weighed 5lbs 10oz, he only lived 20 days – he had a severe form of X-linked Myotubular Myopathy.
Dillon was really tiny I remember holding him for the first time, I felt the weight in his head but the rest of his body was floppy like there was nothing there.
At this time there was little about this disease so we took him off the respirator, soon after he took his last breath.
I got pregnant again in 2003, we found out that it was a boy. I could have had the test to see if he had Myotubular Myopathy. I didn’t – the pregnancy felt good to me, the baby was moving all over. I felt Dillon only move once during the whole pregnancy.
So I named my baby boy Carter. During the seventh month I started to retain a lot of fluid. This is one symptoms of this disease, the baby doesn’t pass the fluid through and the mother starts retaining all the fluids.
Carter was born 30 October 2003, his lower jaw wasn’t fully formed so the nurses thought there was something obstructing his airways. They later realized it was his tounge. He also had a hole in his heart, he weighed 6lbs 1oz – he was the biggest baby in the ICU, he also was the sickest.
Carter was different he was a bit more bigger but I also had the same reaction when holding him. Carter lived for 5 days, we took him off the respirator, he lasted a while before he couldn’t breath any more.
I have no family history of this disease, it would be on my mothers side of the family. My mom sadly passed away after Dillon was born, she had a long fight with ovarian cancer. She lived to see a picture of her grandson, then went into a coma and died the next day 23 June 1991.
Paso Robles, California