Angel Robbie M.'s Story

November 18, 1995-October 27, 2003

We will never forget the words of the doctor "There's something wrong with your baby." The feeling of confusion mixed with grief mixed with anger mixed with sadness. Robbie was diagnosed with hydranencephaly at 3 days old. To be so thrilled at giving birth to a beautiful baby boy, and then to feel such anguish at the thought of losing him ... we never thought that we would make it.

At 16 weeks pregnant, I suffered a TIA, which in normal English means a "mini stroke". I was on bed rest for a week, with all sorts of tests conducted to find out why this had happened. Nothing was ever found. The doctors told me that I was in perfect health, and that the baby I was carrying looked perfectly healthy as well. The rest of the pregnancy progressed very smoothly. After a very difficult birth, Robert Brian Macklin was born. The umbilical cord had been wrapped around his chest, so his breathing was raspy, and his head was swollen, so a pediatrician was called in. She said that he looked fine, but his head circumference was slightly large, so she wanted to do an ultrasound, just to be safe. Everyone was telling us that it was just a precaution, and nothing was wrong. His apgar score was 9, he nursed right away, and he behaved like every other baby in the nursery. The ultrasound was performed on the morning of our discharge. As I was packing up to go home, my father-in-law came for a visit. (Funny story- my mother-in-law had flown down to help us with our 2 1/2 year old daughter and new baby. The night after Robbie was born, she ended up in the same hospital as me with an emergency gall bladder removal. Needless to say, things were already a little crazy.) While Pappy was being introduced to his first grandson, the pediatrician came in and said those unforgettable words. I was in a fog. What I now realize is she was trying to tell me that she thought that my son had hydrocephalus, and she was sending us down to the Children's Hospital to see a neurosurgeon. A CAT scan would be performed to see what extent of damage there was. I called Paul, who was out with our daughter, and broke the news to him. He rushed to the hospital to be with us. So, instead of packing to go home, I was packing to go to another hospital.

The next morning, the CAT scan was done. Then the waiting game began. We prepared ourselves to being told our son would be slow, and have some developmental problems. While waiting for the results, we got to know the boy in the next bed who was in having a brain tumor removed. His family was all there, and we spent the morning talking and watching TV. I remember the news coming on and saying that one of my favorite skaters had died, and then the doctor walked in. He had great news for Cody - there were no tumors in his spine! We celebrated with his family while the doctor went to get the CAT scan pictures. He came back in to the room and asked us if we would follow him into a separate room. Looking back, we should have known that something was wrong. The nurse took Robbie from us while the doctor was talking to us. We sat down, and he looked at us and said "It's not good." I immediately started crying, and he explained that for some reason, Robbie did not have a brain. The rest of the conversation is mostly hazy, I only remember bits and pieces. I do remember him saying that Robbie would most likely never know us as parents and his prognosis was six months at best. So, if we wished, we could just leave Robbie at the hospital and go home. Well, that was just not an option. We could not get out of there fast enough.

Our world, usually very happy, turned gray. We would both break down in tears for weeks afterwards, one consoling the other. It wasn't that we didn't love him, we couldn't love him more, but we felt so sad for all the things we felt he would never get to do, a prejudice we will never be entirely free of. We did not feel the least bit prepared to lose him, not so soon. We had a great deal of trouble explaining things to our friends and family. They all had the best of intentions, but we just could not deal with their reactions. We had enough trouble with our own emotions. Time went by & Robbie developed several health problems. Some of these were dealt with surgery, which was each time like a living hell, and others with medication. We soon grew stronger, trying to take one day at a time, and were able to do battle with pessimistic doctors. We noticed Robbie was capable of far more than the "experts" anticipated. We were frustrated with what we saw as a lack of effort on the part of some health care professionals. They had already written Robbie off. We would not do that, we never will. We decided to raise Robbie just like we do our daughter. He would lead as 'normal' a life as possible, we would not let him be treated differently. We didn't want him to live life "in a bubble". We took him with us everywhere, we didn't keep other children away from him - in short, he was just one of the family. We now believe that this treatment has been very beneficial to Robbie, both in his development and with his health. Doctors seem to agree.

Obviously Robbie was a lot more work. He hardly slept for the first year of his life, so sleep for us was a rare commodity. He was difficult to feed, and often threw-up his medication. Once we found willing doctors, we were able to remedy these problems. The more Robbie grew, the more our love grew for him. Instead of ripping our small family apart, he drew us together, stronger than ever. He is so strong, he is a constant source of inspiration to us. Contrary to what neurologists believe, and despite the evidence -continue to believe, Robbie knows his parents, his siblings and his home. We are the only ones who can settle him when he is sad, will only go to sleep when he is with us, and is never more relaxed than when he is in his home environment. Robbie smiles and laughs when reacting to stimulus, (not just seizure episodes as the neurologists say), he loves to be bounced and sung to, he loves to kick himself in circles on the floor, and he always reacts to our voices. We always know Robbie is sick when we can't get a smile out of him with very little effort. When he is healthy, he is a very happy child.

Robbie is now 5 years old. We have had our share of tears, but more than our share of laughter as well. Robbie is a wonderful child that fills everyone he meets with a feeling of hope and joy. His older sister and younger brother absolutely adore him, as do his mom and dad. We know that God has a special purpose for Robbie, and that he is not a "mistake of nature". He is a beautiful child with a personality and a soul. He has taught us so much about life - how precious each day is, and the meaning of unconditional love.

I hope that in telling Robbie's story you will find comfort in knowing that Robbie has surpassed everyone's wildest dreams. It is amazing what a little love will do for a child.

My son, you aren't what I expected, but still you're my son.
My sweet baby boy.
God sent you to me from heaven for a special reason, I know.
Some say they are amazed at how calm I seem,
but I need to be strong for this child who needs me.
I will always love you.
I will do the best I can until God decides to take you home.
Little child, my helpless fragile boy, so soft and mild.
My source of anger and worry, and love and joy.
I wonder what you feel and what you know.
When I hold you in my arms, I know you can't see my face,
but you look right through my eyes into my heart to see my love.
I promise to be there for you and I'll take care of you,
and I'll hold you when the troubles of life come to you.
My love for you is true and never ending.

Love always and forever, mommy
(Erica Sept 96)
Paul, Erica, Beth, Robbie and Chris Macklin

Robbie died on Oct. 27, 2003