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“Everyone who met him loved him…”
Tucker Wesley Reite, Trisomy 13, 4/5/2001 – 5/3/2003, Georgetown, CA
This story was submitted by Tucker’s sister.
Monday, April 2, 2001 started as any other day, but it ended far from what I had imagined. We had sat down for dinner, as we did every night, only to be interrupted by my mother’s breaking water. That night I sat in Marshall Hospital along side my mother’s bed, seven and half weeks earlier than planned. The doctor confirmed her broken water but said that there would be no baby that night. If mom’s contractions continued to get stronger the plan was to have her transferred to Sutter Memorial Hospital in Sacramento, a hospital better equipped for babies under 35 weeks gestation. With a plan set we left my mom and went home to get some sleep. She promised she would call if any changes took place.
Of course things changed. Don’t they always? We had only been home and in bed a few minutes when we received my mother’s call. The ambulance was transferring her to Sutter Memorial and she wanted us to meet her down there. By now it was 1 o’clock in the morning and my little brother Luke was not thrilled about making the hour drive again. We planned to drop him off at his uncle’s house when he decided he didn’t want to ‘miss anything’ and came along with us. At the hospital we found mom’s room where she told us that they had given her Magnesium to stop her contractions. The longer they could delay the birth the safer it would be for the baby. Each day a new stuffed animal or balloon of some sort found it’s way into her room where she always found a place near her bed. Every day, for nearly a week, we made that drive to be with her.
At 2 o’clock Wednesday morning we were up again at the sound of the ringing phone. This time just Jim (my step father) and I headed out the door, Luke was already gone for the night. We arrived at the hospital by about 3:30, They had already moved my mother down to the first floor into a ‘Labor and Delivery’ room. For about 2 hours the nurses came and went, not really saying much of anything. I started to wonder if there would really be a baby this time. 6 o’clock rolled around accompanied by my mother’s increasing discomfort. We made the suggestion that she get an epidural. It had been 13 years since my mother had had a baby. She was now 41, stubborn, and determined to have this baby as natural as she had the previous 3. All of which lasted about as long as it had taken for her to be sure we all knew that… then she gave in.
On Thursday, April 5, 2001 at 7:07 in the morning, my baby brother was born! Since he was premature, he was immediately whisked away from my mother, something she was told in advance would happen as a standard procedure. After a few minutes, Jim and I followed the doctor’s into the hallway and there I saw him. Tucker Wesley Reite. 4 pounds, 6 ounces, and about as blue as one could be before it looked purple- Just as he was 10 minutes prior to this moment when I had first caught a quick glimpse of his little body.
For nearly 20 minutes I watched the doctors trying to stabilize Tucker. To this day I think those are the longest 20 minutes of my life. I stood near by as his body lay limp on a table with doctors huddled over him. Nurses told Jim he couldn’t look at his son and needed to move away from him so they could work. As this scene continued in front of me I remembered my mother was still in the room by herself but I couldn’t leave as I started hearing the conversation between the doctors. Their conversation including things like, “There is something wrong with this baby” and, “He has dismorphic (abnormal) hands and feet”. What does all that mean when you’re 13 years old anyway? I wondered why the doctor was even paying attention to his hands and feet being ‘dismorphic’ while he was still clearly not breathing! Finally my brother gasped for air and they were able to stabilize him. They took him into the NICU, a special care nursery where they gave him further treatment. Tucker was put on a ventilator and hooked up to several other monitors as well. Only family was allowed to visit him, and even then only a couple at a time. He was tiny, on his little bed, in nothing but a diaper and all kinds of wires hooked to him. We talked to him, touched, and held him. We looked at his hands and feet unsure of what the doctors called dismorphic.
For a week this continued while the doctors ran chromosome test. They pointed out the simian crease across Tucker’s hands, his rocker bottom feet, and the wide bridge of his nose. Things we didn’t think anything of at the time. The test came back and we were told that the results were very severe. After the tests had been confirmed, we were informed that Tucker had Trisomy 13, a very rare chromosome disorder. (Also Recognized as, Patau Syndrome.) We were told that his condition was “incompatible with life”, that there is no cure, and that the prognosis would never change… he would die.
So what is Trisomy 13? It means that there are three of the thirteenth chromosome. Each person has chromosomes from his/her parents. 23 from your mother, 23 from your father. Those chromosomes get put into pairs making it so you now have two of each number (1 through 23). Tucker had three of the 13th chromosome. The smaller the number, the bigger the chromosome itself is. (For example- Downs Syndrome is also called ‘Trisomy 21’. Having 3 of the 21st chromosome = downs syndrome. The number 13 chromosome is bigger than the number 21 chromosome, and is therefore more severe). Those who only have half of their cells afflicted are called ‘Mosaic’.
Trisomy characteristics are a wide range of things including; Eye deformities and/or blindness, often deaf, on oxygen, permanent feeding tubes (because they don’t have the ability manage a sucking function), major heart abnormalities, brain defects (brain doesn’t divide into two halves), severe retardation, rocker bottom feet, and facial deformities. That is just naming a few! Statistically speaking, 95% die before their first birthday. If they survive the womb, they die within a few weeks or months of life- Many only live a matter of hours. Out of all these characteristics and statistics, Tucker had few (in comparison). He had rocker bottom feet, keyhole shaped pupils (making him sensitive to light), blind in his right eye, clenched fist with his thumbs in and fingers crossed on top, a temporary feeding tube through his nose, and was on oxygen for the first six months of his life. He had a healthy heart and brain. Imagine getting all this news about your child? It was hard enough as his sister to take it all in. Would he ever leave the hospital? Ever crawl, walk, talk, even see his first birthday? I had an awful lot of questions and no answers.
When Tucker was one week old he was able to come off the ventilator. That same evening he started having severe apnea. The doctors called late that night and asked my parents if they wanted them to ‘make him comfortable and let him die- in light of his condition?’ How do you even get up enough nerve to ask a parent such a thing! My parents had him placed back on the ventilator until we could get to him. They also requested that the doctors treat Tucker as they would any ‘normal’ preemie baby and his health improved. Every day for a month we made that drive to be with Tucker. Every day I wondered if he’d be there tomorrow.
On May 1, 2001 we brought my baby brother home. The doctor’s had given him no hope of living more than a few more weeks. He was still having some apnea episodes where he would stop breathing and turn gray for 15 minutes at a time- only oxygen keeping him alive. On a few occasions, we thought we had lost him. In the winter of 2002 Tucker fought off his first cold. For the average child that doesn’t sound like a big deal but trisomy children are much more susceptible to pneumonia which is often fatal to them.We went about celebrating each month we had Tucker with us and he continued to flourish. He was drinking from a bottle and eating baby food. He was even learning to feed himself although most of his attempts found a place on his forehead! Pretty soon April rolled back around- He made it to his first birthday! That boy had one of the largest gatherings I have ever seen for a child’s first birthday and I am pretty sure he enjoyed the cake and ice cream too!
When it came time to play, Tucker was ‘all boy’. He loved to be thrown in the air, being drug around on a blanket, rough house around, and he rolled anywhere he wanted to go. The one thing we never did understand was the way he love to smack himself in the face with a metal rattle he had! He was a spoiled rotten and if you made him upset he would hold his breath until he passed out. Something I’m sure he learned to do for attention!
In September of 2002 Tucker started having his first seizures. I say ‘first’ because seizures are one of the many things trisomy children often suffer from. The first time he had one I was home alone with him. He sat contently in his bouncer chair watching his Little Bear cartoon (Which my little brother and I can still quote over half of by the way! ) I had been cleaning the kitchen when I glanced into the living room and noticed he was no longer waving his toys around and seemed more slumped down in his chair. As I walked around the counter to check him I immediately knew something wasn’t right. His little body lay still and his coloring slightly gray. As I unbuckled him from his chair I could see he was breathing although it was shallow. I had already been calling my step father as I was laying his limp body on the floor. I had never actually seen a person having a seizure before, and although his body wasn’t actually seizing, I knew deep down that is what it was. As I was on the phone with Jim I rambled something about him looking gray, being limp, and breathing shallow. He told me that he was on his way and to go ahead and call 911. (At the time, Jim worked only 1 mile from our house) As Jim observed him there seemed to be no change. When the paramedics arrived Tucker was rushed to the hospital code 3. They wanted to life flight him but the helicopter was already on a call and we would have been waiting an additional twenty minutes or so. It was decided that the ambulance at that point would be much faster. I don’t recall where my mother was that day, but even the construction workers moved aside for her in her big bright red Dodge pickup as she raced home in time to see him taken away. Despite the medications Tucker was put on that day, seizures became a part of his life.
Another trip to the hospital took place in January of 2003. This time tucker got his helicopter ride- although not the way most people would have hoped for it. I was working that day when I received a phone call from one of my older brothers. I immediately knew something was wrong when the first thing Bobby asked me was, “ How are you doing?” He never called just to talk, and unless something was wrong he would’ve have waited until I was off work to call me at all. He quickly told me that mom had given Tucker a bottle and then laid him down for a nap. She had checked on him just minutes before and he was fine. Now he had apparently thrown up all over himself. She found him limp and gray, and thought she had lost him. While calling 911 and giving a few rescue breaths he only gasped for a little bit of air. Bobby came to get me at work so I could be with my family at the hospital that day.
Once at the hospital we learned that the doctors were doing a reflex test to see if the things Tucker was eating were coming back up allowing him to aspirate. Thankfully those test came back negative and we no longer worried about a possible Gastrostomy tube (‘G-tube’- feeding tube in stomach). Tucker did aspirate that day, but the doctors believed it to be due to him laying down. They think he must have coughed something up and then aspirated it. During those 2 days that we spent at the hospital with my little brother, I took several pictures of him. His nurse laughed a little about that but we took pictures of him everywhere. It always helped ease the tension, and since we never knew how long we would have with him, we didn’t want to miss anything. My family felt that it was better to have those pictures than regret not having them. I can still remember that day clearly. Tucker laid on his bed with all kinds of wires hooked to him, an oxygen mask, and wearing nothing but a diaper and his ball cap- something he almost always wore.
One month after Tucker’s 2nd birthday is another day that I will never forget. I woke up to flashing lights coming through the window, the sound if sirens in my front yard, and the dogs barking as the paramedics entered my house. It was 6 O’clock on the morning of May 3, 2003. I stood near by as I watched the paramedics working on my brother. My older brother’s Michael and Bobby came through the door and I stood close to them as I watched my precious baby brother’s life came to an end right there on our living room floor. My mother picked him up and held him close. We sat for several hours that day while waiting for the coroner. Family gathered around to say their last goodbyes. As we talked about Tucker’s life, we cried one moment and laughed the next. To this day we still tease my mother about insisting he needed socks on his feet while waiting for the coroner- She was determined that her baby’s feet would not be cold!
Life was a roller coaster with my little brother. Up one day, down the next, and never knowing what was next. Growing up, when I would see a person with special needs, my mother would tell me, “You never know, you might have a brother or sister like that one day.” She was right. Thirteen years later Tucker Wesley changed my life. As much of a challenge as his life may have been, he still accomplished many things. He even crawled the day before he died. It may have only been about 6 inches for us but to him, it was a milestone.
After he died I would still find myself walking into his bedroom in the mornings only to find it was missing a happy and noisy little boy. I never knew I would miss my mother placing him beside me on my bed because he could actually get me out of bed faster than she could. For a long time it seemed so quite without him there to bang on his toys and ‘yell’ at everyone as he played. As challenging as those difficult days were (and sometimes still are), I know that I will see him again. Only this time his body will be whole and perfect, without all the complications of this world, and that is something that makes me smile.
Tucker’s life was accompanied by more challenges than many people ever know, but he didn’t give up. He could put a smile on your face as soon as you saw him. We did everything with him. He sat in his wheelchair weekend after weekend as his big brother did gymkhana and roping. He sat up on the back of my horse with me as I waited for my turn to enter the arena. At the shooting range he sat with his big orange earmuffs, to big for his head and watched. Rodeo/horse shows, camping across the United States, everything we did he was apart of. People were surprised by how much we did with him- I can’t imagine him not being involved.
Although for many people, including myself, Tucker’s life seemed like only two short years it was a miracle just the same. In those two years and twenty-seven days, he loved me unconditionally. He taught me to accept people for who they are and to treat them equally despite their differences. He taught me patience when he couldn’t tell me what it was he needed. Some things you are always told but I’m not sure you ever really learn until you have a person of special needs placed in your life. In those two years he taught me more than I could put here on this paper- Things I will never forget. He couldn’t walk, talk, or do anything for himself and yet, I was the one who needed him. God truly blessed us with Tucker. It didn’t matter that he was ‘different’. We all loved him for who he was. We never thought he deserved any less than ourselves. Everyone who met him loved him, we loved him, we still do, and I always will.