Tuesday, August 22, 2006

“William – my Angel”

How do you measure a life? This is the question that I’ve asked myself over and over again every time that I sat down to write his story. It has taken me two years to do this, and I am able – maybe not able so much as convicted – to do so now on this day because of the significance of it. Today’s date is July 1, 2006. My son, William, passed away on this day exactly two years ago in Ann Arbor, Michigan, following his third heart surgery in less than a year. He lived one year and twenty days. The thought of it now. . . 385 days seems like nothing – such a brief period of time, but as I have tried over and over to write about the significance of his life, I am overwhelmed by an utter inability to find the words to quantify it. 385 days – they were both the longest and shortest of my life. Here is his story.

William Adams Seale was born on June 10, 2003, at Baptist Hospital in New Albany, Mississippi. He was born around 10PM, and his dad and I marveled at his head full of beautiful blonde hair (both of us now have dark hair). There was no mistaking that he had his dad’s eyes, and we laughed and hoped that he didn’t have the “Adams nose.” It was a bit too early to tell on that one, though. Both grandmothers were there for the birth and were eager to get their hands on him before the nursery workers took him to be bathed, measured and dressed.

Video cameras were rolling and as his first couple of hours passed, we commented many times on how “alert” he was – eyes wide opened and seeming to make eye contact with us. He was precious, perfect – 10 fingers, 10 toes – absolutely perfect. At about 4AM, we called the nursery to come and take him back down there because William was just very awake. His dad and I were exhausted and eager to get just a few hours sleep before the day started. We asked for them to bring him back down to our room when it was time to nurse.

We woke up at about 8AM and realized that they hadn’t brought him in to nurse yet – he was an hour late. Scott called and asked if they would bring him back to the room. The nurses said that the pediatrician was there and that William was resting now, but they would bring him down after he woke. Another hour passed with no baby. At this point, he was 2 hours overdue for breastfeeding and I really began to worry that he’d be hungry.

At about 9AM we decided to just walk down to the nursery. As we went down the hallway, we noticed that all of the blinds were drawn. Our first thought was that it was probably due to the pediatrician rounding. We knocked on the door, and a nurse came quickly. We told her that we were William Seale’s parents and that we were just concerned that he hadn’t eaten in five hours. The nurse stood with the door only open about two feet and placed her body in that open space. “If you will go back to your room, the pediatrician will be in to talk to you in a short time.” It took maybe a moment – maybe a couple of seconds for that to sink in. Once it did, the air around us seemed to be sucked through a vacuum. I looked at her and said, “Is everything OK?” She replied politely but firmly, “Just go back to your room and the doctor will be down very soon.”

That’s when I knew. We began to walk, and I turned to my husband, Scott, and said, “Something’s wrong. I’m going back.” Scott tried to calm me by saying that he was sure it was nothing – that we just saw him. As we walked back down that hallway, every step felt like you were wading through deeper and deeper quicksand.

The pediatrician thankfully came into our room quickly. He stammered for a moment, calling us “mom and dad” instead of by our names, asking us if we hadn’t noticed something – a change in his color. I wanted to scream at him to just get to the point because I was just so sure that the fear was worse than the actual diagnosis. How wrong that thought was.

The pediatrician put on his best devoid of emotion face and began. “When I saw your son this morning, I knew that something was wrong. His color was very bad, so we began checking a few things and have done an x-ray on his chest. I know that something is wrong with his heart because it’s enlarged. That indicates that it’s being overworked. His oxygen levels are very, very low, and we have him on a lot of oxygen right now in the nursery. We need to transfer him immediately to a Neonatal Intensive Care Unit. You have two choices. . . Tupelo or Jackson.”

Since Tupelo was much closer than Jackson, we chose Tupelo. We then asked when the transfer would be. He said that he’d already called, and Tupelo’s NICU team was ready to come now. As we struggled to process what he’d said, I glanced at the nurse who followed the doctor into our room. I’ll never forget her face. She was trying desperately not to cry, but finally tears fell and she quickly wiped them away. She was the same woman who met us at the nursery door.

The next few hours were surreal. There was a flurry of activity. We wanted to see William before he left with the NICU team. As we were leaving the room, we met our family who’d brought our two year old daughter to meet her little brother for the first time. Everyone was crying, not knowing what to think or do. Phonecalls were placed to our pastor and his wife. Discharge papers were given to me so I could go and be with my son. Scott hurriedly gathered our things and took them to the car. Meanwhile they brought William into the room in what looked like an incubator. This precious little perfect baby who I’d seen only hours before now looked like he was struggling to breathe. It was excruciating. We tried to stay calm because our daughter, Sidney, was just so excited to see her new baby brother. She patted the top of the incubator and said in the most precious little voice, “baby Liam.”

Once we arrived at the NICU, things progressed very rapidly. He was diagnosed with Corrected Transposition of the Great Arteries, Pulmonary Atresia, Dextrocardia, and two VSDs. He looked so odd in the NICU with all of the premature babies. William was full term and looked like a giant compared to them. We met our beloved pediatric cardiologist, Dr. Stuart Birnbaum, who quickly became a beacon of hope as did an incredibly gifted Neonatologist, Dr. Brian Darling.

Together, Dr. Birnbaum and Dr. Darling navigated us through the next two weeks. We waited and watched to see how William progressed. We could only see him once every three hours for only fifteen minutes at a time. It was excruciating. We tried to manage life with one person with our daughter and the other with our son at the hospital. It was difficult and incredible stressful. There were many, many days when they tried to change something or start a new IV line or a PIC line when I would just sob that I wasn’t there to hold his hand or show him that I’d be his protector – his mother. I wondered if he even knew who I was. I wondered how this tiny little baby would have such a will to survive even through such painful circumstances. We prayed and prayed and prayed – first for it to be a mistake, then for God to miraculously heal him, then to find a surgeon that would perform the operation needed to save his life.

After two weeks of ups and downs, we were finally on a flight to Ann Arbor, Michigan. We’d never even heard of Mott Children’s Hospital, but had been assured by our most trusted doctors that this was the very best place with the very best surgeon. Dr. Ed Bove would help our son. He did just that.

William had his first surgery on July 1, 2003 – ironic date, huh? Once the surgery was over and we began going into “Pod A” - the pediatric cardiac intensive care unit - we were overwhelmed by the number of infants born with heart defects requiring this level of care. What a joy it was to see their level of expertise. It was a truly incredible place. They talked to us extensively telling us about things they’d seen and babies they’d taken care of like William.

As our strong little brave one kept progressing, we finally found ourselves on the way home with this precious bundle. It had been an extremely long six weeks in the hospitals, but we were finally going home. On July 17, William finally got to see the inside of his own house. He actually smiled in his sleep when we took him into his room for the first time. It’s on the videotape! Our sweet neighbors had made a huge banner that was draped across our front porch that said, “Welcome Home William!” It was signed by all of them. We all stood there crying in the front lawn as they got to see him for the first time. Oh, we were so proud.

The next couple of weeks passed very quickly. We needed almost constant help. William had come home from the hospital with a feeding tube and had to be fed every three hours. I was using a breast pump to get milk, then mixed it with powdered formula to increase his caloric intake. We were told that he might have trouble gaining weight if we didn’t do that. We were also told very specific things not to do. No crowds, no children, no strenuous activities. Always remember to give the medicines correctly with the tube feedings. Too much or too little in his bloodstream can be dangerous. Call the doctor if this, and call the home health care people if that.

Everyone was incredibly excited to have him home, but we were all on pins and needles with his care. We just wanted to make sure to do everything right. Our daughter, the sweet, sweet little girl who had just turned two, had her entire world turned upside down. What a trooper she was, though. Through the doctor’s visits, the three hour round the clock feedings, the grandparents being there constantly, the home health care people coming and going. . . she seemed to take it all in stride. And William, HE THRIVED! He began to gain weight and those scars healed and that little one was just the happiest thing we’d ever seen. He was such a little blessing to us. When we got down or tired or any of that, we could just look at him and tell ourselves to come on – look what he’s been through and look at him now! He was our hero – our light – our inspiration.

And yet, there was fear. We had been told by Dr. Bove that the surgery he did would not be the “full repair.” No, the full repair would come when William was about twenty pounds or two years old – somewhere in there. Those words loomed over us like a dark cloud of pure fear. Dr. Bove explained to us what he would do to William’s heart to repair it, and it just seemed like so much for anyone – much less an infant to withstand. Every single visit with the pediatrician or cardiologist seemed to be a wonderful thing. He was always doing so well with his development and weight gain, and just so happy to see everyone. But the scales, they were like a ticking clock – a countdown to handing over our precious baby again, not knowing if he would be coming back.

William only had a minor cough once. We kept our daughter, Sidney, out of any mother’s day out program or day school for fear of infections. It worked well because you could look at him and tell that we were doing the right thing. We talked to friends who had kids with stomach viruses and RSV, and we were absolutely going to do everything in our power to keep him safe. That safety meant basically we went nowhere except the places we had to go – the doctor’s visits. Trips to Wal-Mart or the grocery store were quick and once we walked in the door we changed clothes from head to toe so that nothing ever came in contact with him that could be a threat. Our hands cracked and bled because we washed them so much. We became certified germ-o-phobes!

When William was about four months old, his color became a little off. It was hardly noticeable, but Dr. Birnbaum, his cardiologist, wanted to figure out why. William was sent to Memphis where Dr. Birnbaum’s partner, Dr. Dane Douglas, performed his second heart catheterization. After the cath, Dr. Douglas informed us that William’s shunt, the piece of tubing that was allowing blood to flow from his heart to his lungs, was closing off. It was down to less than 1mm. We were instructed to stay there and wait to hear from him again. Within only a couple of minutes, Dr. Douglas had contacted Dr. Bove in Michigan, and we were scheduled to be flown back to Ann Arbor for a shunt revision the next morning at 6AM. We didn’t even have time to go home and pack anything. Scott and I called our mothers who were keeping Sidney, our daughter, and they were able to bring us a few changes of clothes before the flight.

It was a very scary night. William was on oxygen and a heparin drip, and the nurses had to continue coming in to check his vitals and take blood. They tried and tried to get a line started before the transfer took place, and William would just scream every time. As he screamed and got more upset, his oxygen levels would dip so low that he would begin to struggle to breathe. It scared us to death. Finally I told one of the nurses that she had to stop. She looked at me like I was just an overly emotional mom, then walked out of the room. At that point, even if I’d had to tackle her I would have. No one else was coming near him until we got to Michigan.

Would you believe that the shunt revision, William’s second surgery, was so fast that we were in and out in only ten days! We came home on top of the world. It felt as if he was blessed by God. He had been saved not once, but twice and was doing better than ever. People marveled at how incredibly strong he was. I kept in touch with others through email and was just so proud to share his latest feats – crawling, babbling to sister, and laughing out loud – those days were the most beautiful of our lives.

As March approached and with the cold and flu season nearing its end, we were able to take him for the first time to our church to the people who’d prayed so diligently for his recovery. Scott and I were beside ourselves. We dressed him up and absolutely loved for people to come and look at him. He would smile from ear to ear and it just made us so happy for him to be happy. He loved the music too. What a great time we had there.

Sadly, it was short-lived. By April, William had reached almost twenty pounds. Dr. Birnbaum called Dr. Bove in Ann Arbor, and a surgery date was scheduled. He would have the full repair surgery on May 24th, 2004. Scott kept a positive outlook on things and tried to think and speak only of how great it would be once William could have a normal life. However, I was a different story. I was almost paralyzed with fear. I would stay up at night and just hold him with tears welling up because I was scared that those were the last days with him. I prayed and prayed and begged God to give him a long and healthy life – to get him through that surgery and bring him back to us. It was not to be.

We flew with William to Ann Arbor on May 20th. The 21st was to be a day of testing – an EKG, echo, bloodwork, x-rays, etc. Everything passed without incident except the bloodwork. There were less experienced nurses trying to take a great deal of blood from him, and I truly almost lost it with them. I had gone to the restroom, and Scott was with him when they tried several times unsuccessfully to get the blood they needed. I actually knew which room they were in because I could hear his cries through the door and down the hall. Sufficed to say, they stopped and we tried as best we could to soothe him again. It was if you began to feel what he felt in some way. I would’ve changed places with him a thousand times if we could’ve spared him an ounce of pain.

After the testing on Friday, we had the weekend – just two days more with our precious son. Scott tried to spend that time playing with him and holding him, and I felt almost as if there was lead in my arms when I held him. The fear was excruciating. We took lots of pictures of him and lots of video. Those things are now our prized possessions, for they are our last days with our son as he was before the surgery.

Surgery day – Monday, May 24, 2004: we were to bring William down to the pre-op area by 6AM. He was to have nothing to eat or drink after 3AM that morning. I got up and fixed his last bottle and gave it to him as he slept and I cried. That morning, we got up and were dressed by 6AM. We then took William in his pajamas and wrapped him in his blue and white baby blanket. We began the walk through the many corridors to the pre-op area. We had done this twice before, but this time it was different. The fear was overwhelming. I wanted to run with him out of that place and never let anyone touch him again. I wanted to hide away and wish that they would just forget he was to be their first case that day.

Dr. Bove met us in pre-op and spoke briefly of William’s chances. He said that overall, the operation he was going to perform had a 92% success rate. He said, “William has a very complex heart, though, so because of the positioning of his heart and the difficulty in the operation, William’s chances are probably closer to 85%.” 85% - doesn’t that sound pretty good? It’s not as if at that point there was a choice. We were there for this surgery and Dr. Bove had saved our son’s life twice before. . . he would do it again, wouldn’t he? Sadly, he would not be able to.

After William’s surgery, he went through six weeks of absolute hell on earth. The doctors would ultimately say that he couldn’t “tolerate” the full repair. I have replied many times to them that an “intolerable repair” seems to be an oxymoron. I know they are good people and never intend for things to go wrong, but things did go wrong and I still to this day want answers.

I will spare you the agonizing details, but our precious baby spent his first birthday, June 10, 2004, hooked up to a life support machine called ECMO. This machine actually circulates the blood through the body to give the heart a “rest.” Two cannulas were placed into his neck that were the size of garden hoses. He looked as if he was already gone. There was just so much blood.

The doctors tried everything – they tried another surgery to alter the first. They brainstormed endlessly about what they could do. There were days that were good but many more that were bad. We begged God for mercy on our child and asked him to heal his little body and bring him back to us.

The last day, July 1st, we were forced to do the unthinkable – take him off of the life support systems. His body was swelling rapidly and he was getting impossible to ventilate. The pressures were so high in his lungs that even on the highest setting, the vent was having trouble pushing in the air he needed. His kidneys and liver had failed, and we were told that it was only a matter of time until his brain and heart would. I say we were “forced” because we could see that every minute he was with us longer was another moment that he suffered more. Dr. Bove said it best when he told us that morning, “All hope is lost.”

As the nurses disconnected the life support machines, one gave him a dose of morphine so that he’d feel nothing. Another was standing by me as I held him – I guess she did that in case I dropped him. There were many people around – all were crying. I remember saying in the last moments, “I can’t do this, I can’t do this.” A nurse who’d taken care of William several times kept telling me, “Yes you can. For William’s sake, you can. This is not him. He’s already gone.” But you see to me, it was him. When his little hand squeezed my finger, I said it. I said, “he squeezed my finger.” The same nurse said, “he’s just telling you that it’s ok, that he’s ok.” I will relive those moments for the rest of my life. Even today, when I looked at the clock, I relived what we were doing each hour of that darkest of days.

It took William only a couple of seconds to pass away. He gasped for air twice, and I wanted so badly to scream for them to bring him back. All I could do was cry and hold him. All that any of us could do was cry. This little angel of ours had now become one. Although my faith tells me that he is in a better place without any more pain and suffering, my heart tells me that I want him here. It tells us that daily. We miss him desperately.

The impact of William’s life is hard to quantify. For now, you see, I am living a life for two. Every action that I take, every person that I help, every good deed that comes as a result of his life experience is done for him and in honor and loving memory of him. I now take time to seek out those with similar losses and help them by sending books that have helped me in some measure. I now lobby the legislature to test all infants born in our state for heart defects by measuring their oxygen saturation before discharge from the hospital. I now work with the local media outlets to make CHD Awareness Day in our area is a day of information about signs and symptoms of heart failure to look for in your infant or child. I now hold book drives to start a “Giving Library” at our local hospital’s pediatric unit. I now raise money for the March of Dimes to prevent birth defects.

Would any of these things be done if he were still here? I can’t say. In my many talks with God about why he took my son so early in life, I have tried to reason with him that all of those things could’ve been achieved without the loss of William. However, my reasoning doesn’t matter at this point. He is gone – I should accept it. I guess that is the human frailty in me. I loved him so much that I would’ve put my own desire for him to stay above his quality of life.

I feel his presence with me on many, many occasions. I thank God for that. My faith has been tested and strengthened. My marriage has been pushed to the limits of destruction, and is now stronger. I am more caring and compassionate because of him. I am a better mother to our two daughters because of him. We have a new baby, Ruth Ann, because he passed away. We were otherwise planning no other children.

William was the greatest gift that our family has ever been given. I once saw a plaque in a children’s furniture store that said, “Twinkle twinkle in your eyes, are you an angel in disguise?” I had to get it immediately – it was William. That plaque went into his room and is there to this day. It’s also inscribed on his gravestone just under a picture of him. It turns out that he truly was. What an incredible blessing, and what an awesome responsibility to live life now for two.

Written by: Jamie Adams Seale

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