Parents: Julieanne and Glenn
Hometown: Runcorn, Cheshire, England
September 1, 2003 – September 6, 2003
Christian Robert’s Story
Christian was born at 36 weeks following an uneventful but busy pregnancy. Julieanne’s biggest concerns were the sex of the baby, and that there wasn’t much kicking at all. Considering that her previous pregnancy was with twins, she thought this one was just quiet in comparison. Julieanne remembers, “Some people thought that I was fussing unnecessarily by visiting the hospital and at each visit Christian was scanned and the blood flow through the placenta was assessed. At no point during any of these assessments was it noted that Christian was presenting as a child with a chromosomal abnormality.”
Julieanne and Glenn received the diagnosis when Christian was five days old. “We were asked by the consultant to go into the family room we knew that they were waiting for some results but we were hoping that they would say that Christian had Down’s syndrome. We had never even guessed that they were about to tell us our son was going to die.” Julieanne recalls, “We did not realize even then how short a time we would have with him otherwise I would not have left him for a moment.”
Julieanne was booked for a c-section when they found that Christian hadn’t been growing as expected. Measuring below the fifth percentile, they were preparing themselves to have a small and very lazy baby. Julieanne thinks back, “Everything seemed to go wrong that morning; they lost my notes and the receptionist insisted that I wasn’t due for a c-section. Julieanne walked into the surgical theatre feeling a spasm of fear. “I knew something would go wrong.” Forty minutes later, they delivered a beautiful 3 lb. 3 oz. baby boy.
“I was terrified by the size of Christian”, Julieanne recalls. She felt overwhelmed with fear for “the little mite” they had been given. She was convinced his small size was the result of working too hard during her pregnancy. Other than a crossed finger on each hand, and a tiny big-toe on each foot he seemed absolutely perfect. “Glenn tried to reassure me and said that we could get him special trainers when he grew up and his feet would not handicap him and his fingers could be sorted out by physiotherapy.” They wheeled Julieanne into recovery as Glenn held the still unnamed Christian. The nurses prepared and dressed him, tucking him into his hot-cot to keep warm. “I was getting used to the thought of having another son and was thinking two sons, two daughters what a perfectly balanced family and how lucky I was at the moment.” Julieanne rocked Christian in his little crib and Glenn took pictures and then called the family to let them know of their new brother and grandson.
The nurses came in to check on Christian and noticed that the grunting noises they were all mistaking for hunger sounds were actually due to his having difficulty breathing. They admitted him into the Special Care Unit to monitor his breathing and check whether he had any infections. He spent almost the rest of his life inside the special care intensive care nursery.
Julieanne feels, “Christian’s care was wonderful.” She remembers fondly, “The nurses at the SCBU were always welcoming and I spent a lot of time in the chair next to Christian’s incubator reading a book or watching him give his little arms or legs a quick shake, or just looking at him and sending my thoughts of love to him.” It was a welcome contrast to the nurses on the maternity ward who seemed more remote and not very interested in what was happening. Julieanne remembers being tired after the operation on Monday and did not really understand how poorly he was. They gave her a photo of Christian so whenever she woke up she could look at him. His condition worsened over the course of the next day and they feared they would not be able to take Christian home. They decided to have him baptized. The nurses said that he was doing very poorly, but was stable. He was on morphine to keep him sedated and they had increased his antibiotics. He was reliant on the ventilator to breathe.
“On Thursday Christian seemed to be improving and even the doctor who had been so pessimistic the day before acknowledged that somehow Christian had begun to improve on more than one front. Glenn’s brother came down and we apologized for wasting his time rushing to visit when it looked like it was a false alarm and Christian was starting to make a recovery.” Julieanne remembers, “Every phone call to friends and family seemed to bring better news in small steps; reduction of medicine, talk of weaning from the ventilator, no more bleeding.”
On Friday Julieanne woke to news that Christian had his best night yet. They started reducing his sedation and he finally started to wake. “They gave me a Polaroid of Christian with one eye open, looking directly at the camera.” Julieanne felt sure that everything would be ok now. While she waited for Glenn to arrive, the nurse asked if Julieanne wanted to change his diaper. She gladly volunteered, “…and soon got into a mess when trying to change his nappy while avoiding tubes and catheters. I talked to Christian apologizing for my clumsiness and accidentally hit his ventilator tube in his mouth as I drew my hand out of the incubator window. Christian’s eyes flew open as is to say “Who woke me?” I stood there talking to him, telling him how lovely he was.” Christian held Julieanne’s finger and looked her in the eye. “As I talked to him, his mouth seemed to open into a smile and he seemed very content and alert, as he had been on the first day.”
The doctor had arrived and it was time to meet with him. Christian’s tests were back and as they arrived in the SCBU Glenn squeezed Julieanne’s hand and told her that whatever happens to be brave. They were told it was Edwards Syndrome and that this condition meant shortened life expectance, hardly any children live beyond a year, some suffered from SIDS. “All the words hurt I cried and then tried to control myself to listen some more, and then just cried again.”
Julieanne remembers asking if they could take Christian home to die. The staff promised to work toward building him up to get him off the ventilator so he could go home. At one point al alarm went off as Christian’s ventilator became blocked. They removed the tube and used oxygen and then put him on a CPAP machine leaving Julieanne and Glenn shaken by the thought of all these people fighting to keep him and hurting him when he is just a tiny boy. They decided that it should not happen like that again. They advised the doctors of their decision that they did not want him to be in pain or interfered with more than he needs. The doctors agree, but they still had no idea how little time they had left with him.
They left the hospital together to see Julieanne’s parents and their children and tell then the news. When they returned to the hospital, Christian’s oxygen levels had dropped. The family takes turns holding Christian and Julieanne’s sister takes lots of photos and some short videos. Later on Julieanne and Glenn are alone with Christian. The night nurse tells them she will return every two hours. She settled Christian down and gave him 2 mls of milk. “You can almost see him purring as the milk fills his little tummy”, Julieanne recalls. Her father arrived just after two in the morning. “He talked to Christian but to this day I have no memories of what he talked to him about.” After her father left they were again alone with Christian. “Christian stayed awake and looked at us for a long time just quietly watching our faces. I told him to go to sleep and he will wake up in his granddad Bob’s arms.” Christian slept for a while. They held him together, Julieanne holding Christian and Glenn with his arm around them both. Julianne handed Christian over to Glenn for a while and then asks if Julieanne thinks Christian has died. “I think he has but I don’t know when. We held until the nurse came in at 5am to check on Christian. We shook our heads at her as she walked through the door. The doctor came to check Christian’s vital signs and confirmed that he was gone.”
They washed Christian and changed his clothes then wrapped him tightly in a blue blanket. They told him that they loved him. At last they were able to hold him without any tubes or needles getting in the way.
“We are thankful for the chance we had to know Christian and to show him what a lovely family he had. We spent our days telling him how much we loved him and in the end he had met or been cuddled by everyone who was close to him. For such a little man, he gave a lot of love.”