Friday, shortly after noon, the phone rang. It was our pediatrician’s nurse who informed us that our test results were in and we were needed in the doctor’s office immediately. With the knot that had been ever present tightening even more in the pit of my stomach, we quickly loaded the children into their car seats and, without delay, headed downtown to the office.
Dr. Simo met us with a very serious face and ushered us into his office. The grave expression on his face froze the knot in my stomach. He quietly explained that in the 24 hours plus since Jonathan’s release his bilirubin levels had increased to dangerous levels.
“I made a most grievous error in listening to a mother’s heart, and not my head, by letting you take Jonathan home before his levels went down. My mistake might have cost you your son. The neonatal staff is waiting for you at CHEO. You must go directly there and Jonathan will be admitted and a double blood exchange will be done in hopes of saving him from permanent brain damage. We can only pray that we are not too late.”
“What?” I gasped. “Do you mean I can never nurse him again?” My husband stared at me incredulously; unable to believe I was questioning this when our son was so ill.
“Actually you do not have time to do that. They are waiting, as we speak, for Jonathan. Every minute is essential. You must go directly to CHEO with the baby. I’m so sorry. I feel I have failed you.”
Wordlessly we directed the girls back out to the car. Sensing the stress, sadness and tension, the girls were remarkably quiet. Even 18 month old Jenny was silent in her hated car seat. I strapped tiny Jonathan into his car seat, barely able to keep the tears back. My mind was whirling. Not only had I begged to have him home as soon as his billi was stable, perhaps my persistent efforts to nurse him had actually been harming him. When I shared my fears and guilt with Hugo, he was too worried to be able to discuss it. Ultimately we just continued the half hour drive, in what was now rush hour, to CHEO in silence, each lost with our personal worries and feelings of guilt.
When we finally made it there we were whisked up to the NeoNatal Unit where the double doors loomed ominously before this tiny family of five that suddenly felt so fragile. I held Jonathan while Hugo clasped each our daughters little hands in his. We were all quiet.
The nurses on duty were huddled together watching for our arrival. One of htem came forward and greeted us and took Jonathan from my arms. My eyes filled with tears as Aimee suddenly cried out "Hey - why are they taking my baby!??" Not 'our baby' but my baby. She so clearly felt very protective of her baby brother. Another nurse stepped forward and knelt down to her three year old height. "It's okay honey." She reassured her. Your baby is sick and we are going to make him all better. She took Aimee's hand and brought her to the window of the room they had taken Jonathan to and lifted her up to see. A nurse was undressing him and doing the perfunctary examination, heart rate, pulse while another was preping him for an IV. He was too weak to protest.
She put Aimee back down and we then followed her to the room one usually passes by extra quietly when the door was closed. The family consultation room. This is where you usually saw the extended family of someone critically ill, consulting with a doctor and one instintively walked by more quickly while lowering your voice out of repsect for thier sorrow. This time we would be the consultees.
We waited anxiously for the doctor who would be handling our son's neonatal stay and, we prayed, his recovery. I do not even remember his name or his face. I only remember his voice, somber, as he broke the news to us.
"At this point your son's billi levels are so high that is almost inevitable that he has brain damage. The question is how much. The only option is to do a double blood exchange using a universal donor blood type. Then it will be ‘wait and see’ as we must then hope that your son does not reject the new blood and/or develop a blood infection. I'm sorry - I really can't tell you more than that."
CONCLUSION
My husband cleared his voice and I struggled with our 18 month old as she got bored with sitting still in this quiet, low lit, small room. It was littered with well thumbed magazines, but despite this being a Children’s hospital – there were no toys scattered about. Aimee sat quietly on the edge of her chair swinging her legs to and fro – her eyes clasped on the adults’ faces as her 3 year old brain tried to assimilate all this grown up talk about her baby. Hugo’s low voice broke through the silence as he asked he could please be the donor for his small son. We were at the peak of the AIDs scare and just in the doorway of the beginning of pre-testing blood supplies. His request was flatly denied as even if they were of the same type, his son’s weakened state especially required that we use a universal blood type, O negative, to try and eliminate as much as possible the chance of rejection of the donor’s blood. I felt the same helplessness, crowded in my chest, which I saw on Hugo’s face. There was little left to be said, so after murmuring a few more words of reassurance that we were doing the right thing, the doctor shook our hands and left to see how Jonathan’s prep for the procedure was coming along.
We gathered up the girls and ushered ourselves to the elevator and then to the lobby. Hugo held the girls hands while I fished for quarters in the bottom of the knapsack that doubled as my diaper bag. I happened to have my address book in there and we began making calls. I no longer remember the order in which we placed them but we called my parents in
As before he looked so peaceful, stretch our in his little cot – sleeping. It seemed he slept more now, than he ever had while tossing about inside my belly the last weeks before his birth. It was hard to believe that he was so ill. A nurse noticing me came out with a smile and a hug. She encouraged me to try and rest – your son will need all your strength once this is over and you need to learn how to pump your milk.
She had my attention now. I did not want to leave my son’s side for a second but this first hint that perhaps I might actually be able to actively do something for him, I was willing to go else where. She lead me to a room that was just for parents of seriously ill children where they was a sleeper sofa that could be pulled out for the night. Thoughtfully someone had already placed an electric breast pump in the room for me. The machine and I were about to become best friends. The nurse quietly explained to me how to use it and also reassured me that soon I would be able to try nursing my baby again but for the first 24 – 48 hours he would be on formula as my milk would surely have antibodies in it and in his condition his liver could not handle them. She tried again to get me to rest. She explained that Jonathan would sleep through the whole process and, once it was completed, they would wake me and let me come and see him. “You are looking at being here at least ten days, if your son progresses normally so you really must try to rest while you can. I can not promise this room will be always available for these ten days. “
I traipsed out one last time to see him before calling Hugo to ask for a few things that I would be needing him to bring me in the morning. Then I settled down for what I was sure would be a sleepless next four hours. But my fatigue took over and I fell into a deep and dreamless sleep punctuated only by the hallway speakers that called doctors from here and there.
A gentle shake woke me and I scrambled up, confused, and stared at the nurse. She smiled.
”Jonathan is awake, would you like to see him?” She pulled me out of the middle of the springy mattress and I hurried to the nursery with her. At least here I would be allowed to touch and hold my son while he recovered. They wanted me near to him as much as possible as they felt his mother’s contact with him would help him to recover. I couldn’t agree more. There was a rocking chair waiting for my tired body and I sat into it gratefully as I reached through the port holes of his incubator. I gazed at all of the tubes and flashing lights, while his nurse explained what they were all for. I leaned my head against the plastic of his bed and stared at my small son as his chest rose and fell slowly. I stroked his tiny hand and relished the softness of his skin. I prayed for forgiveness at my impatience to have him all to myself that had lead to his being released too soon. If only the nurses at his birth hospital had allowed me to sit by him, instead of claiming him all to themselves, I sometimes justified to myself. Then I would not have pushed so hard to have him released and then we would not be here.
In this quiet room with the lights generally down low, beside Jonathan was his little roommate, a beautiful baby boy who had been born full term, but had suffered severe brain damaged and had been airlifted to CHEO, his parents too far away to be able to be with him. My heart went out to him and his parents. The room was designed for four neonatal patients and of them all Jonathan was the smallest, even though at 6 lbs he would have been typically on the large size for neonatal patients. Across from us was an 18 month old who had lived her life to date in that room. Her family came once a month as they hundreds of miles away. She had been born with a heart and lung condition that would keep her confined to a hospital all her living life. The fourth baby was abandoned. His parents could not deal with his infirmities and he was now a ward of the province. Our son’s difficulties as serious as they were, suddenly paled in light of what these tiny children, and their families, were facing.
By Jonathan’s second day they were ready allow him to try nursing again. I was elated and scared. Would he reject nursing after two days of nipples and formula? Hugo had enjoyed a turn or two of feeding his tiny son but was happy for me that I could try nursing my baby again. Jonathan and I cuddled together in the rocking chair, practically my home by now, and immediately, with great gusto that was similar to how his older sisters had attacked their first attempts to nurse, this little boy settled into a good lunch. I was elated. Content, with a little drool of milk hanging about the corner of his mouth, Jonathan continued to sleep when I slipped him back under the lights over his incubator. Carefully I arranged the pads of gauze over his eyes to protect them from the bright, warm therapy lights. I was full of joy – such a radical change from just 24 hours earlier. The doctors were amazed at the quick recovery Jonathan was making. Instead of ten days they were now thinking he might actually be able to return home in five. They could not believe how quickly his billi levels were dropping. There were no signs of infection or, as importantly, of rejection of the donated blood. I tried not to think about AIDs.
Finally on day five our daughters, with the pictures of Jonathan that the nurses had sent home for them clasped in their little hands, arrived with their Daddy and better yet, also with Jonathan’s car seat. Even though surprised with Jonathan’s extremely speedy recovery, the doctors did not feel the need to question it and were ready to release him. While they might have been puzzled, I was not. I knew without question that we had been blessed with a miracle through the prayers of family and friends at home. God had seen fit to answer them. It was a long eleven years before the question of question of whether the blood had been tainted by AIDS or not would be answered. A few children from that time frame, and same hospital, did go on to develop this terrible disease, but we are very grateful to say that Jonathan was not one of them. Neither did he ever show any signs of the irreparable brain damage that they thought had occurred when his Billi levels hit such sky rocketing levels. Sometimes when reminiscing over this miracle Hugo will tease Jonathan that “Now you know what’s so wrong with you.”. In truth though, we just feel ever so grateful for this huge miracle that was handed to us on a silver platter. God is Good!
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