Isaac was born into this world, May 23, 2011. He was tiny at 5lbs 11 oz, and 19 inches long. He was my first grandson, the only boy, since I had two girls. After his birth in the hospital, he had difficulty latching on and it was equally hard to feed him by the bottle. He was released two days after birth. He was such a joy to everyone, and to us a perfect little boy.
Isaac was finding it hard to nurse, even when we took him home. My daughter made his one month appointment and he weighed-in only at 6lbs. He was unable to gain weight and was sent to a specialist to test for a heart murmur. That test came back good. His heart was strong. Yet, we observed Isaac wanted to sleep a lot, was very lethargic and always had clenched fists.
The pediatrician placed him on one-half breast milk and one-half formula in hopes to put some weight on him. At 2 months, he was still only 7 pounds. I decided to make a trip to Cincinnati, which is about 3 hours away, to visit a friend. After being there for 3 days, I received a phone call from my son-in-law that Isaac was being life flighted to St. Vincent’s Medical Center in Toledo, Ohio. They had found him in his crib, barely breathing. He spent two days in the hospital while they ran a multitude of tests.
When we finally received word Isaac was to be released from the hospital, a specialist came in to check on him. Rather than returning home, he was immediately sent to Toledo Children’s Hospital, and placed in ICU. I made my journey home from Cincinnati to learn from the physician, that had the kids not found him when they did, he would have passed away. At that time, his passing would have then been declared as SIDs.
Isaac had to be intubated, as he was forgetting how to breath on his own. He remained in this state for a month. At one point, they took out the tubes and tried straight O2 (oxygen). When I went to visit him, I found him really dazed with a blank stare, as if he were not getting enough air. Doctors concluded he had a problem with the flap over his esophagus, it was not closing and making him aspirate.
We discussed with the physicians that the best thing for him was to have surgery for a tracheotomy. The assistance of a trach would help him to breathe. We had a family discussion about it, and came to the decision that it was best for Isaac. Isaac was three months old.
Immediately after the surgery, Isaac was touch and go. His head swelled from being sedated and constantly in one position, but he was kept this way so his trach could heal. Once he was taken off the sedation, he was awake and looking around.
Isaac had an MRI of his head and we learned the tragic news, his brain was shrinking and the physicians had no idea why. At the time, the shrinkage was considered very minimal. The physicians called Isaac the million dollar baby, running every test imaginable, for every rare disease out there. Isaac was then transferred to Cleveland Clinic, to see if they could find anything different. He was sent back to Toledo Children’s a week later.
At five months old, Isaac had to have another surgery, to have a feeding tube placed in his belly. The NG-tube in his nose was causing damage due to the reflux. They again sent him for another MRI and confirmed his brain had shrunk even more. The doctors told us it would progressively shrink until his heart gave out. At 20% shrinkage, there was fluid filling in the gaps.
We did not lose hope, we kept our faith.
I did more searching, and posted his symptoms on every Facebook page I could find, along with his picture. A mother sent me a personal message and told me to call her. She wanted to speak to me about my grandson. When we spoke, she said Isaac looked exactly like her daughter did before she was diagnosed. She pressed that we get him tested for Congenital Myasthenic Syndrome (CMS) and provided me with her specialists’ number at the Mayo Clinic. My daughter and I went directly to the hospital and requested Isaac be tested for CMS. We were informed he had already been tested, yet when I mentioned this to the mother who contacted me, she encouraged us to make sure he was tested for the antibodies. They needed to go further with their tests. I asked Isaac’s physician to please contact the doctor at the Mayo Clinic. Isaac was placed on mestonin (a drug used for neuromuscular disorders) that night. Within a week, Isaac was smiling again. Our prayers had been answered.
Isaac did well for a few weeks. Then, he started having seizures and so they put him through another MRI.
His brain shrinkage was up to 25% and all the tests came back negative. By this time, there was a nurse on the night shift, searching for answers as to what his condition could be and why. At six months old, Isaac was fighting the battle of his life, and as long as he kept going, we fought with him. He was finally gaining weight due to the feeding tube, but continued to have seizures. So, they administered phenobarbital (an anti-convulsent) to control them.
When Isaac turned 7 months, he hadn’t really progressed, and when his parents requested another MRI, the shrinkage was up to 35%. Whatever this disease was, it was progressing fast. The physicians said they could not give us a timeframe, only that it would continue, and they could not stop it. He was having daily, physical therapy, where they placed splints on his hands and feet. His hands were so clenched, his nails dug into his palms.
At the age of 8 months, Isaac’s health was getting worse. He was rarely awake, was deaf in one ear, and going blind. They said he could see shapes and that was it. It was almost Christmas, the case worker was preparing for the possibility to bring Isaac home, with home health assistance.
Christmas came and went. Isaac had gotten worse. Up to 40% shrinkage now.
February rolled around, Isaac was still deteriorating, diagnosed with STAPH in his trach, and had an eye infection. What could possibly get worse? In March, we had to fly to Puerto Rico, for a funeral. The day we were returning, my daughter received a phone call that Isaac’s heart rate had bottomed out. He was now in pain, and his shrinkage was up to 50%. I told her, don’t make any decisions until you get home, and see how he is. Maybe he just misses you.
Our worst fears had come true. We met with the doctors on Saturday, March 24th. His parents had decided it was time to take him off life support. As a grandmother, my world was turned inside out. On Sunday, March 25th , we left for the hospital to say our last goodbyes. It was the hardest day of my life; watching both of my children in pain and and unable to fix the situation or help them. Was this actually SIDS? We had no answers as to why Isaac became so sick. Was this Cerebral Palsy? We will never know what happened to our baby boy.
We took all day, everyone holding him, loving him. We just couldn’t stop. My daughter and son-in-law, asked all of us to leave the room so they could have some time alone with him. We all left, and went to the waiting room, About 20 minutes later, I went to check on them. At 10 months old, Isaac was blue, they had taken him off life support without us there. They didn’t want us to have to witness it. Isaacs’ heart was so strong, he lasted an hour and a half before they pronounced him at 8:40pm. We stayed there with him until 1am. They let my daughter bathe him, redress him. I took some more natural pictures with her and her son. Just the pain in their faces. My youngest brushed his hair and cried. The pain of not knowing what was wrong, why couldn’t they fix him. It just was not fair.
It is unknown what Isaac had. It is so rare, it does not have a name. We are still awaiting the final results of the CMS test. It is now September. No other cases have been reported.
Isaac was put on this earth to teach, and that he will!