From: DebGilmre@aol.com
Date: Thu, 18 Sep 1997 10:47:30 -0400 (EDT)
Subject: My candle in the wind!

Dear All,

Gosh, how do you start a letter like this? The last couple of weeks have been far more of a roller coaster than I ever hope to endure again. Had it not been for our son’s doctors, and a wonderful staff, I feel like this could have had a much different outcome on our emotions.

Matthew is not doing well at all. He came through the surgery with flying colors. We all were excited and talking about having Matthew in our room the next day. The heart was fixed to perfection and he looked great. At 10:00 PM, they removed his intubation. At 12:00 AM, he had his first bottle and smiled for us. At 0200 AM, he had a cardiac arrest.

This was a great shock to all of us as he was doing so well. The doctor and the staff maintained CPR for 40 minutes while they got Matthew onto the ECMO machine. Matthew remained on ECMO for 4 days, and was finally taken off it. He seemed to be stable and doing better. The doctors did a baseline CAT scan and it didn't show anything unusual, so we waited. Matthew then went into kidney failure and had to be put on dialysis . It seemed like his kidneys were starting to work again just a little, but after a while, it became evident that the kidneys were in failure again.

Another CAT scan was done. This one was much worse and showed severe damage to the brain. The only part of the brain not affected was the brain stem. We continued on with his maintenance, hoping for some sign of life to be there. Slowly, his eyes opened and he moved just a little. However, we were not sure if this was controlled or just an involuntary reaction.

On Friday, the doctor had to bring us the worst news of our lives. He said that Matthew most likely would never get any better than what he is now, and basically how did we want to proceed? He said it much nicer, but that was the bottom line. We asked to have a neurologist come and look at him , and they said that they would arrange that for us. We were told by several doctors that when there is brain damage and kidney failure, there is not much hope.

You basically have two choices : you do maintenance and keep his body alive or you stop the maintenance and let nature take its course.

These are not easy decisions to make. Do you take your child off of life support and let him die, or do you go on for months or years with your child in an institution, being supported by machines with risk of infections, loss of muscle mass, and failure of all the organs with maybe a 1 percent chance that anything will change. Even if it would change, there is no guarantee as to what his quality of life will be. Not to mention any other heart problems that may arise from having so much other trauma going on. Please understand we have not been given the option of having a handicapped child - we have been given the option at this time to have a child who cannot see, hear, move, eat , etc. There is basically no life here at all.

We have decided on option #2 . It has taken us 3 weeks of going back and forth, and weighing all the options to decide upon this. It has been the hardest decision we have ever had to make in our lives. Matthew was wanted so much and loved even more than that. He was such a special child with lots of laughter and sunshine. We don't know how we will live with out him - just going to a McDonald's with out him is terribly hard to do. We have to believe that it is in his best interest to let go of him.

Sorry but I had to stop for a while and it is now the 18th of September. The neurologist came in and told us basically what the other 5 doctors had said: there was no hope of Matthew ever getting any better. This was on a Monday. We called Gene's parents and family and asked them to come and be with us and they said that they would. On Tuesday the 16th of September, Matthew was taken off the machine's supporting his life. They said he may last 3-5 days before finally passing, however his lungs were filling with secretions and he was getting worse even before taking him off life support. In a way this gave us a sort of sign that we were making the right decision.

The hospital at this time gave us many options on how we wanted to deal with this. We could leave Matthew in the room he was in and just visit him or we could have him back in our room to hold and love. They even said we could take him outside in a stroller for a walk -something I never thought they would agree to . His doctor said, "What a better way to go to sleep than being outside in the sunshine". They assured me that Matthew would not be in any pain, but the toxins would just build up and would put him into a deep sleep and he would never wake up.

That night Gene's family got there, and Matthew was held by each one as they said their final good-byes. We asked for a pulse oximeter so that we would wake up if something should happen. We wanted desperately to be with him as he left, and we didn't know just when it would happen. The nurse put Matthew's bed in between ours, and raised our beds to be the same level, and then left us. She said that she would be in every two hours just to check and make sure that he was doing o.k.

We held and loved Matthew through the night, sleeping in bits and pieces here and there. Around 4:00 am the pulse ox started going off, and we realized that it was happening. We turned the alarm off, but left the readings so we could tell just where Matthew was at all times. The heart rate went from 60 to 30, back to 60, and the O2 levels fell but not fast - it gave me the impression that he was floating back and forth, slowly. Then, when the reading was at 0 we called the nurse in. It was so peaceful.

Around 0630 on the 17th of September, Matthew went back to heaven in a quiet, dignified way. The nurse came back in and removed the rest of the IV lines, and Gene and I gave Matthew his final bath. We dressed him in a darling outfit that his sister had brought him. All the staff that was working came in to grieve with us. I feel as if they loved Matthew too.

All I can say is that I am so grateful for the peace I feel with this. I hurt so bad. This morning was the hardest because I cannot go and touch him, and kiss his lips. But he is in a far better place - no more surgery - no more pain.

Gene and I have a hard road ahead of us, but I am sure when Brandon gets here around the 21st of December, I will have less time to grieve. Matthew will never be forgotten, but Brandon will see that we at least have some laughter in our lives again. I am so glad that I am already pregnant, because I feel that it would have been a lot harder to "want" to get pregnant again. It is a great loss, and you never want to go through something like this.

I believe that God makes things happen for a reason, and I feel blessed that I had my 15 months with Matthew and that I was given the chance to say good-bye.

The staff at the hospital were always positive, caring, dedicated, and never hesitated to answer any questions that we had, and sometimes would just talk with us about feelings. Matthew was in a bed for almost an entire month, and never had one bedsore. They massaged him, creamed him and most of all they loved him. I will never forget the day that the cleaning lady came in. I was out on the balcony and she went to Matthew's bedside and tears just streamed down her face. Nor will I forget the other cleaning lady who would come in every morning she worked and, first thing, she would give me a big hug. They all became part of my family during that month.

This reminds me of the song, " Tears in Heaven" by Eric Clapton . I feel like we were in heaven but Gene and I just couldn't stay- we had to let Matthew stay alone. but then again, he is never alone:)

I am sorry this has been so long, but it is important for me to let you know that with the right facility, the right staff, an otherwise terrible situation can have some really beautiful parts. It will never be easy to lose a child, but it can be done with a lot of peace, love & compassion. This is much better than having to deal with two traumas at once. I will continue to help as I can on the list - if anyone has any questions or I can help in any way please e-mail me. I have to believe that this has happened for a reason, and maybe that reason is to help someone else get through a very tough experience.

My love and prayers are with all of you. I thank you all for the support, prayers and phone calls during this time.

Debbie Mom to Matthew TOF changed to DORV with pulmonary stenosis. Shunt Aug. 96, TOTAL CORRECTION 17 Sept, 1997. We love you Matthew !!!!

Reprinted with permission from Baby Hearts Press

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