Errol Milner Clifford 2006-2009
Errol Milner Clifford was born with a significant heart defect and a cognitive disability that prevented him from walking or talking. As we grieved the child we had anticipated, Errol’s full-bodied smile and irrepressible laugh turned our sorrow into joy, and taught us that many of the best things in life are unexpected. Inspired by Errol’s delightful spirit, friends, family, and neighbors rallied to support our family’s significant emotional, physical, and financial needs, through countless acts of selfless generosity. When Errol’s courageous heart finally failed him on December 23, 2009 we were left numb with grief. In these dark hours we listen hopefully for the echoes of Errol’s brilliant laugh. This blog is the story (starting from present and working back to Errol's birth) of the life and times of the amazing Errol Clifford.
Thursday, November 30, 2006
Errol loves Owen. Owen loves Errol. We all love everybody. Errol's life is getting so much better in so many ways. We are beginning to have expectations again (a good and a bad thing, but certainly better than hoplessness). These are rich times with our boys. We have never had more to be thankful for. Gobble! Gobble!
Errol was admitted to the High Point Regional Hospital at age one hour. His mother had only briefly held him, nursed him, and cried over him. Now, in the nurse’s car, I was on the way to the hospital with Errol - fighting for his life. Cary was recovering from a grueling delivery at the birth center. They would not let her leave for four hours. We didn’t know what was wrong with Errol, only that he was blue and getting worse.
We raced the block to the hospital. I ran to admissions to prove that I had insurance and give them our vital details. The nurse rushed in to admit Errol (when a doctor or nurse runs, you know you are in trouble). All the while I was hoping for the best, thinking obsessively about little Errol who had not yet had the strength to cry.
I got out of admissions and up to the top floor where Errol was being attended to by a team of nurses. At this point little Errol had a onesie on (the one we thought we’d take him home in – expectations can be our greatest enemy), a little hat, and some socks. The nurse was administering oxygen through a blower that was propped near his little head. I rushed up and they told me that they weren’t sure what was wrong but that they were concerned about his oxygen saturation level. Monitors had been attached to his chest and hands and machines binged and flashed out a 75. What did it mean? 75 is not so great in a high school class, was he near failing? I didn’t know. I asked. The nurse said that she wanted his numbers to be around 80, but that he needed to stay above 70 for sure. She seemed seasoned and competent, but there was uncertainty and concern in her voice - I was worried.
I helplessly watched Errol and focused all my attention on the numbers which flashed over and over (an OCD nightmare adding to this larger nightmare). The numbers weren’t holding steady and were easing down; 75, 74, 70, back to 75, 74, 74, 44 (surely a misread), 74, 74, 73, back to 75 (thank god), then down, 74, 74, 73, 72 (now consistently), 71, then back to 75, then over again. I was becoming crazy on the numbers. I wanted Errol, I wanted him healthy, I wanted his mother with me. This was not supposed to happen.
The nurse walked over and turned knobs on the oxygen and his number (whatever they meant) would go back up for a while, 79, 79, 78, 79, then slowly decline, 78, 77, 76. Poor little Errol didn’t know what was happening (at least he didn’t know it wasn’t supposed to be like this; trauma, struggle, pain. This was all he knew. It was normal, but it had to hurt) 73, 72, 71. He had just crossed to this side of life and now he was slipping back, too soon.
As his numbers sank, so did my hope. There was nothing I could do other than obsess (at least I'm good at that). I held his little blue hand tightly. He didn’t know me. What could I do for him.
I felt awful about it, but I was feeling emotionally aloof. I didn't know how attached to get to this little boy. Was he going to leave us? Was he going to die? Should I commit myself emotionally to a baby who was about to die? I felt horrible about these emotions, but they were how I was feeling.
His numbers dropped past 70 and then nurse put a nasal canula on him (a tube that forces oxygen up into the nostrils). Little baby Errol responded with higher numbers, but he was struggling. We had been about an hour in the hospital. The nasal canula seemed like the answer, but after a half an hour of relief, it too failed to sustain our Errol. The nurse just had one trick left up her sleeve. They put Errol in an oxygen tent which supplied him with top shelf oxygen. This worked too, but it’s effects were only temporary. Because of the tent I was no longer able to hold Errol, and took to pacing violently around the nursery as I watched his monitors like a hawk, and waited for his mother to save the day.
My son was dying. I asked the nurse for her opinion (again). She was clearly concerned. I asked her if there was anything we could do. She called the doctor. I paced, Errol’s numbers dropped and his blueness increased. Cary was in the birthing center exhausted, beside herself, and being held captive with stories about “Errol’s alright, this is not that unusual,” anything to keep her from leaving where she had just given birth.
Dr. Jedlica, the pediatrician, came in and went straight to Errol. She looked concerned. She knew something was wrong, but she didn’t know what it was, and so didn’t know how to treat him. We could both see we were losing him. Something in me softened. I reached under the tent, held Errol's hand tightly and made the connection to him, the committment, win or lose, I loved him and held him for dear life.
A hospital is supposed to save you. As long as you can get to a hospital you will be alright. You will make it. A lot of my beliefs about how life works were being tested, and I was starting to lose my faith in medicine quickly. Here in the 21st century, surrounded with expensive machinery, a good nurse, and an excellent doctor, we didn’t have a whole lot better idea about how to save my child than a stone age farmer in Papua New Guinea would. The doctor did what we all do when we don’t know what to do. She made a phone call.
Luckily she was able to call Brenner Children’s Hospital, just a half hour up the road in Winston-Salem. It’s one of the top Children’s hospitals in the US. They have more equipment and know how than most countries in the world have. Surely they could save him. If they couldn’t, no one could. She called for the Brenner transport team and had a pediatric cardiologist on the line giving her advice about what to do for Errol. What she would have to do was to put a line in (an IV) and do it fast. The doctors would need access to his veins for medicine and labs.
It’s uncomfortable to see anyone cut on another person, but it was unspeakably hard to watch her trying in vain (sorry) to find an access point on tiny Errol.
Dr. Jedlica tried and tried over and over again. Errol was in pain, but hardly had the oxygen to produce any sound from his silent wails. I watched through the glass window. I'm not religious, but I pleaded for Errol's life. "Please let him live." A cry into the great unknown. I was frantic and in tears. Through the glass I could see the doctor struggling to find access through Errol's belly button that had two hours before been attached to his mother. It was a ghastly sight.
I kept asking the nervous nurses when the Brenner's team was going to come. They made phone calls and kept saying, "soon, soon." Errol's numbers kept dropping and he was surely going to die if nothing changed quickly.
After Errol and I had been in the hospital for a few hours, Cary walked in - she had given birth about two hours before following an all natural twelve hour labor. She wanted to see her boy. I took her to the window onto Errol's room and explained all I could. We held each other and sobbed and sobbed. We couldn't hold our boy, and we couldn't do anything to help him. We felt completely powerless. We held each other.
The transport team was still on its way. They had apparently been routed to Statesville to a dire emergency. We were in limbo as the clocks ticked and the machines pinged away.
Finally, about 8:00 the Brenner nurses strode in, deliberate, but not rushed, all business. I've never been more glad to see anyone in my entire life. There was a respiratory specialist (Bev) and an IV specialist (Marsha). If they couldn't stabilize our Errol, no one could. The High Point nurses and doctors moved away for the experts. Cary and I were exhausted, tearful, confused, but mostly relieved that the cavalry had arrived. Bev and Marsha got right down to work as Bev tried to stabilize his breathing and Marsha began trying to find a vein. Marsha tried Errol's arms, legs, feet, hands, and finally his head (with what's called a pic line). Finally they got a line in through his head and could begin to administer a drug called prostaglandins to get his heart working. After another two hours, Errol was stable and we were on our way to Winston-Salem.
You always think of an ambulance going fast, but the pediatric transport ambulances roll very slowly (they have fragile cargo). The drive that took us 20 minutes, ten long hours ago, took about 40 minutes (although it seemd like 40 hours) on the way home. We trailed the ambulance and rolled up to the Baptist Hospital emergency department around 11:00.
Thursday, November 02, 2006
Errol suffers from Rubinstein-Taybi Syndrome, which means, amongst other things, that his IQ is somewhere in the 50s and that he is what most people would call “mentally retarded”.
The constellation of physical disabilities that accompanies RTS is ferocious, but is suffer the right word to describe his mental capacities?
But if Errol could be typical, would I want that for him?
They say that some parents of blind children resist operations that could give their children sight. I’ve always thought that their resistance was selfish and that the parent should do what is best for the child.
If it were suddenly possible, would I have Errol undergo an operation that would increase his IQ by 30 points or so and make him typical?
I love Errol, exactly as he is (Mohawk and all), but what would be best for Errol?
Errol will probably not be tremendously analytical, quick, or abstract in his thinking, but Errol is sweet, lives in the moment, and most importantly is tremendously happy. Errol is exactly what I hope to one day become.
I don’t know how Errol would answer the question, himself, but as for me I would never choose to subtract one ounce of joy from our blissful Errol boy.