My name is Marie, and my son Reid was born on November 6, 2007. Because he was motionless and unresponsive at birth, I was not allowed to hold him or even see him up close. As the doctors prepared to move me into the recovery room, I kept looking over at the table where doctors and nurses were tensely clustered around my newborn son. I kept seeing glimpses of his sweet head and body, and my heart ached to be close to him.
I knew that something was wrong because everyone was silent, no ‘Congratulations!’, and my son was not crying. That first cry of one’s child is the one cry that tells you everything is okay. I’m still waiting to hear his first cry. I think I would not mind if that cry lasted forever…as much as I want to hear it.
My little sweetheart is so patient with all the suffering he’s had to endure. It’s so easy to make him happy just by singing or holding him. I feel like I could gaze into his big, soulful eyes forever!
Here’s a summary of his treatment thus far:
I had an uncomplicated pregnancy except for polyhydramnios, very excessive amount of amniotic fluid. During labor, the docs did a special procedure of slowly releasing the amniotic fluid rather than just breaking the water, because they were concerned about cord prolapse. Basically, the doc made a small prick so the amniotic fluid would drain out slowly. He would gently push against Reid’s head, causing Reid to bounce up and fluid to escape as my contraction pushed Reid back down. He had to do this repeatedly for about fifteen minutes, until the doc was exhausted and he switched out with another doctor, who had been monitoring the position of the cord via ultrasound. This process of slowly draining amniotic fluid took about half an hour. Within the next hour, I delivered Reid vaginally with one big push. His Apgars were 4 and 5 because of the floppiness. Other than that, he looked normal and his color was pink immediately after delivery, although, he went into respiratory distress right away.
Reid was on a ventilator for the first week or so after birth. Then he was switched to CPAP, with only a very little pressure needed (3 or 4). Because his needs were so small, his team tried to switch him to nasal cannula, but it seemed to really tire him, so they went back to CPAP.
Reid was also born with club feet (an associated symptom of MTM), for which he has been treated since about two weeks old. His orthopedist used the Ponseti method of long casts to straighten his legs. Then the orthopedist switched Reid to a D-B bar, which looks like a snowboard, to just stretch out the muscles. At the hospital where he is currently living, they want to switch him to splints because they feel a D-B bar is old-fashioned and more uncomfortable.
He’s had two CAT scans, two MRIs with spectroscopy, and two EMG’s, which were all interpreted as normal. The first CAT scan revealed a small, subdural hematoma, but the doctors didn’t think that this was causing the problem. Subsequent CAT scans and MRIs showed the bleed to be resolving on its own. After numerous metabolic and genetic tests that came back negative, Reid had a muscle, nerve, and skin biopsy done on January 16, 2008, as well as a g-tube placement at the same time. We received the muscle biopsy results quickly = MTM. X-linked is suspected because of the severity and possible family history; my mother had an infant brother, who died in early infancy of unknown cause.
On January 28, Reid had trach surgery. The g-tube and trach have drastically increased his comfort. After the tracheostomy, Reid was gradually weaned off the ventilator (which he needed just for surgery), and now he breathes fine on his own.He just has a mist tent blowing humidified room air over his trach. His team then felt Reid was stable enough to leave the NICU.
On the day he turned three months, he was transferred from the NICU to a nearby children’s rehabilitation hospital. Now, my husband and I are being trained by the nurses in how to take care of him with the plan of bringing him home.
Sometimes, I’m so discouraged by the way the medicos treat him like a lost cause. But he’s gotten this far and it helps so much to read stories of other children like Reid who are surviving and living meaningful lives.