On Thursday May 6th 2004 our lives were given yet another gift from God in the form of the birth of our second son Ethan Paul. It was in the early morning when we first saw his face. He was just as beautiful as we imagined him to be and so much more. Our family has now grown to two boys and a girl. My eyes fill with tears of joy even now just thinking of how much love my heart can hold. We brought Ethan home on Saturday May 8th and he was a perfect baby. He was quiet, didn’t cry much and slept really well. We thought, how lucky we were, his personality was so laid back we thought we just had a low-key baby. By the time he was six days old we started to feel that Ethan was just too quiet, slept too much, and just a bit too laid back. When he did cry it was more like a scream rather than a cry. Ethan just didn’t seem right, he slept the night away with no interest in eating. We called our doctor with our concerns and even though their response was simply "that it was normal and he most likely had colic", we insisted that they see him. That evening we took Ethan in and the next thing we knew we were heading back to the place he was born. So we arranged for someone to watch our three-year-old son and drove to the hospital. During the first four days he endured all kinds of test and we were given many different theories of why Ethan was not getting better and only getting worse, but no answers came. A first-year doctor appeared to have a greater interest in showing how much knowledge of the medical textbook he had rather then making us feel confident that he would help our son. Also during these four days while yet another doctor was looking at him she witnessed Ethan have a seizure. Again our hearts continued to be ripped apart as we learned that we were not getting closer (so we thought) to bringing Ethan home.
Next came even more tests including an MRI and EEG. At this point Ethan was now nine days old and we hadn’t even had the joy of being able to look into his eyes and allow him to look at ours because his eyes had been closed for about seven days now. By that time Ethan had lost his ability to suck so we had to place a feeding tube in him. One of the hardest things we have ever had to do was to accept that fact that this little tube was the thing, at this point that was keeping him alive. Later we would find out that was the thing that was also killing him. In retrospect that is a hard pill to swallow. On the 10th day Ethan was moved to the PICU and we awaited the results for the MRI. The wait was hard and gave us little hope that we would get anything other than bad news. Sure enough Dr Fain explained to us that Ethan had something called Luco Dystrophy and was given just two weeks at the most to live. Our lives were shattered; the family that we thought we had, would now once again leave us a vacant seat at the dinner table. My wife and I said for the first time a prayer together out loud. We prayed for strength and to ease the suffering for Ethan, but at the same time we asked God if he could grant us a miracle for more time with Ethan. Then the miracle happened! Dr. Fain looking for a better answer had given us hope for the first time. He asked us if we noticed a sweet smell with Ethan and right away we both said yes. Three hours later, Dr. Fain spending all that time on the phone, said he thinks Ethan has MSUD (Maple Syrup Urine Disease). Next thing we knew we were following an ambulance carrying Ethan to Ann Arbor. The next day after arriving at Mott’s Children’s Hospital our world and faith again would be put to the test when Ethan stopped breathing and was put on a respirator.
At that point we thought we were going to lose our son, but the miracles kept on coming. Ethan was taken off the breathing machine the next day. After meeting with Dr. Carlson the metabolic Neurologist on the 11th day we finally had the answer that Ethan has MSUD and Dr. Carlson knew just how to make him better.
While still having a feeding tube and in a coma, Dr. Carlson gave Ethan a special formula called Kenotex. A day or two later he opened his eyes for the first time, then the next day he moved around and soon started to take a bottle by mouth. This may sound strange, but my wife and I were fighting for who gets to feed him in the middle of the night, so we both did it together. And loved every minute of it. Then Ethan did something that we didn’t even realize that had never done before. We heard his voice for the first time. A beautiful coo! We cried tears of joy for the first time since he was born.
Now we are home and without the feeding tube. Our quiet, low-key baby is now not so low- key and not so quiet. Ethan smiles all the time, he loves to play with his bother and sister and talks to anyone who is around to listen. It is still unknown what the long-term effects will be with Ethan but he is growing like a weed. He rolled over at 3 months and is meeting or exceeding each milestone with flying colors. Ethan also started walking at 1 year. There is no greater joy to know our Family is now complete. There will always be a seat at the dinner table filled by Ethan.
Ethan is home, for the first time he is where he belongs and is still that perfect baby we first fell in love with on that early Thursday morning May 6th 2004.
A Seat at the Dinner Table for Ethan
- Written by John Jackson
- Category: Volume 23-1