Andrew’s Story - Updated

A couple of months ago, I posted this story on my blog. Today, I'm sad to report, Andrew died after a brief battle with pneumonia. My husband, daughter and I were with him in his final moments. Just as much as Andrew fought his way into this world, he also fought his way out of it. Andrew's life has been a long journey that has taken us to so many unlikely places. Andrew, you've touched so many people in your quiet way. Watch over us, buddy.

On November 18th, 1986, I gave birth to our first son, Andrew, via “crash” c-section. My husband and I had rushed to the hospital because my water had broken and we knew that something was wrong. When we arrived, the doctor on call hooked me up to a fetal monitor, gazed at it with a deep look of concern and then put her hand on my leg and said: “I’m sorry, but there’s no heartbeat.” Seconds later, she saw what she called an “agonal” heartbeat and I was rushed into an operating room where Andrew was delivered. For eight minutes, he did not breathe. Then, he barely began to respond. They hooked him up to a ventilator and put him into the neonatal intensive care unit.

As the day wore on and my anesthesia wore off, we found out that despite my unremarkable full-term pregnancy, I had something called vasa previa which essentially meant that part of the umbilical cord had branched off separately. Often, women will have vasa previa and it won’t be discovered until after they have a healthy delivery. In our case, it was different and oh, so wrong. My water broke at the exact point where the separate part of the umbilical cord had formed. Since it was a weaker part of the cord, it sheared and Andrew lost blood and therefore oxygen. The doctors assured us that there was no way to have known that would happen. We, and Andrew, were just unlucky victims of the odds.

Andrew stayed in the NICU unit where a battery of tests was run. Neuro specialists were consulted and within a day or two they told us that Andrew had virtually no brain activity. They and all of the medical experts felt that leaving him on the ventilator was to keep him alive by extraordinary means. And so, we made the gut-wrenching decision to have life support removed from our newborn son. First, we asked a Catholic priest to baptize him. The medical staff then asked if we wanted to be there when they removed the ventilator, but I couldn’t do it. The idea of watching my son die was simply beyond unbearable. And so we returned to my room and waited. And in a cruel twist of fate, Andrew started to breathe on his own. He was sustaining his own life without a ventilator. We suddenly found ourselves caught in the parental hell that is grieving over the fundamental loss of a baby while wondering why God was keeping his body alive.

As the days and weeks passed by, we started to adjust to the idea of parenting a developmentally disabled child. However, his disabilities were so severe; they were beyond that which we could handle in our own home. We spoke to social workers and staff who unanimously advised us that bringing Andrew home would rip our marriage and our future family apart because he would require around-the-clock medical care. He was likely blind and deaf, would never walk or talk, could not feed from a bottle or ever swallow food and his cognitive age would always hover around 1-1/2 months. He would never be able to recognize or acknowledge us. Essentially, he was and always would be in a vegetative state.

We were in such a fragile state of confusion about what to do next for our child who was essentially living in the shell of a body. At one point, we petitioned the hospital ethics board to ask what, besides removal of the ventilator, were considered “extraordinary means.” It was an agonizing path for parents to take but we did not want Andrew to suffer needlessly if his time with us was limited. The board basically said that all current measures should continue. We were comfortable with their advisement. Next we faced the decision of how to care for Andrew for the rest of his life.

We found out that our options were to find a foster family specially trained in caring for developmentally disabled individuals, or apply for a placement at a state-run center about an hour from our home. We chose the latter, feeling that they would be better equipped and trained for his care. That would also allow us visit him in comfort and convenience and give him access to the very best therapies and medical care available without having to leave his surroundings. Administrators from the center visited Andrew at the hospital. His appearance was deceiving since he was such a beautiful baby. His constant seizure activity had not yet started and years of immobility had not yet wracked his body with spasticity and brittle bones. They found that he was appropriate for placement and on January 7th, 1987, after he was fitted with a feeding tube, we drove him out to the center.

The initial days after January 7th are a blur. I remember visiting Andrew every weekend for several weeks to make sure he was getting the best care possible. We found the center to be a place filled with residents that had a wide variety of horrific disabilities. Some of the older residents had Down’s syndrome and had been placed there decades prior. (Something, of course, that would not be done today.) Others had dramatic and horrible birth defects. Still others were victims of strokes or near drowning or asphyxiation. These were the kids that you don’t see in the Special Olympics. They were special alright, but without mobility or communication or many very basic human skills that would allow them to interact with or benefit from mainstreaming in the community. Frankly, it was disturbing to go there. Not because it was a depressing place, but because the residents were so deeply damaged physically and developmentally that the first instinct was to turn away.

The gentle and competent staff embraced Andrew with enthusiasm and joy, something that had been woefully missing since he was born. To them, there was little point in discussing what was wrong with him, because he was what he was. Their goal was to take this tiny, damaged infant and treat him with the utmost dignity, respect and love that was possible. To this day, I think of them as angels on earth because of the way that they swooped down and gently cradled Andrew when we, the parents, were at our most vulnerable.

Weeks, months and years went by. When Andrew was first born, one of the neonatologists estimated that he wouldn’t live beyond five years, due to his many medical complications and his potential for life-threatening respiratory issues. He did indeed suffer through many bouts of pneumonia when he was young. Once Andrew passed his 5th birthday, we stopped asking for long-term prognosis. It seemed obvious to us that God had a purpose for Andrew here on earth and although it was beyond our comprehension, we just had to do our best to keep him comfortable and well cared-for to the best of our abilities. We feel very strongly that the center has fulfilled this mission for Andrew and for us.

Andrew turns 20 this weekend. His birth and his life have changed us immeasurably. My husband and I are better parents to our two other children who are now 19 and 14. They have become very compassionate, kind and sensitive young adults, no doubt as a result of visiting their profoundly developmentally disabled brother regularly since they were born.

When I tell people the story of Andrew, I usually condense and soften it. Not surprisingly, it’s a conversation stopper and it’s the difficult answer to the question: “So, how many kids do you have?” Mostly I do this to try and protect the person asking because sometimes Andrew’s story elicits tears. Most of the time, it makes people really, really uncomfortable because they have no idea what to ask next. I completely understand that reaction and work really hard to avoid it. Nevertheless, I always try to tell people that Andrew’s birth was both the most tragic and beautiful thing that has ever happened in my life. While we were still reeling over the blow that life had dealt us, friends and family from far and near descended upon us and helped us through that first very difficult year. Their love and support has touched us to this day and continues to sustain us and Andrew.