A few days after Oliver's birth, while I was sitting by his side in the Neonatal Intensive Care Unit, a nurse paused to ask me how I was doing. I think my numb look and tear filled eyes answered her question. She told me that the level of stress on a parent with a baby in intensive care is greater than that on a soldier heading into combat. I can't say if this is true or not, but what we were grappling with was so much more complicated. There simply are no words powerful enough to capture the depth of grief, confusion, and emotional turbulence that Shami and I went through, and continue to go through every day, even one year after the birth of our little boy. Oliver's first birthday brings back memories we wish we could erase from our minds forever, but the consequences of that day will never allow us to forget. Some of you know quite a bit about what happened, and what we are going through. Others know very little. Perhaps more as therapy for myself than for any other reason, I thought I would write down a little bit of our story. Feel no obligation to read on.
We were thrilled when we found out I was pregnant. I had waited for a very long time to start this new chapter in my life. My pregnancy was healthy, and we were filled with hope and anticipation. I exercised, ate well, and read all the books. We were going to do this right! Shami and I were booked into the Birth Centre of the Royal Prince Alfred Hospital, the major teaching hospital in Sydney. It was perfect for us – I wanted to have a laid back, quiet and natural childbirth, yet we were comforted that should anything go wrong we would be well taken care of at this major hospital.
Three days after my due date I finally went into labor. We were beyond excited – this was it! We labored at home through the night, and arrived at the Birth Centre at 4:30 in the morning. When my water broke at 8:30 am there was meconium in the amniotic fluid and we moved to the Labor Ward to be monitored more closely. We were reassured that this was not uncommon, happening about 20% of the time, and that we should not worry. So we settled into the new room, and I was fitted with a continuous heart-rate monitor. I was disappointed that the baby would have to be checked by a doctor before I could hold him, but I understood that was what needed to happen. The excitement didn't subside because I knew I would still have my baby boy very soon. Shami was an incredible and tireless support, and I anticipated the rush of emotions I would feel when I finally held my baby in my arms. I was so eager to meet him, the prize at the end, and it kept me going through a long and hard labor. How I looked forward to cuddling and nursing my baby. How I looked forward to telling our family and friends all about our new little boy. How I looked forward to bringing him home, rocking him to sleep, playing with him, watching him grow, learn and explore the world. I dreamed about his future as I looked forward to our new life together as a family.
Our little boy was born on September 11th, 2007, at 12:30 in the afternoon. A fitting day, I suppose, for how things ended up. After two and a quarter hours of pushing, an episiotomy and a third degree tear, our baby finally came. The joy ended. In an instant our world turned upside down. Our happiness, our dreams, and our future were torn from us. Things went so terribly wrong.
Our baby lay there, quiet, limp, and motionless. The midwives were stunned. Then the whirlwind started. They clipped the cord. He was not breathing. His heart was not beating. A resident was standing by to deal with meconium, he was not expecting to revive a dead baby. Soon there must have been a dozen people surrounding the crash cart. I looked through an acrid and prickly fog at a scene I did not understand. There was a swarm of frantic doctors saying unpleasant things in unpleasant tones. I remember the clock on the crash cart, counting the seconds up and up... nothing... nothing... It took them 6 minutes to get his tiny heart beating, and each second was an eternity. We do not know for how much longer than that our little boy had been without oxygen. Our precious baby, who was just was trying to be born, had the cruelest entry into this world. He was a strong 4.02 kilos (8.8 lbs), and a fighter. But he used up all his reserves until his head and his heart just could not keep up.
Our poor, helpless little baby. He scored a mercy 1 on his Apgar, for color, and had a horrifying blood pH of 6.9. Shami held onto his little toe as they revived him, and I asked that he stay with him as they carted him off to the NICU – one of the best, we were told. Luckily, that was just down the hall from where he was born. I could not accompany them, and wouldn't see them again for many hours. I lay in shock in a pool of blood where I had given birth to him. On top of everything I had a placenta that would not detach. After many failed attempts to deliver it I was finally wheeled to surgery to have it removed manually. It had been a healthy placenta. We were later told that the sudden switch of the euphoric mothering hormones to stress hormones could wreak havoc like this. So after a completely drug-free labor and delivery, I was given an epidural. Actually two, as the first one did not work. I lay there bleeding, waiting several hours through two epidurals and the procedure, not knowing what was going on with my baby. I had massive blood loss and became extremely weak and anemic. But I don't think there is any suffering that can compare with the absolute despair of knowing that your newborn baby was fighting to stay alive with unknown brain damage.
Hours later I was wheeled into the NICU on my recovery bed to get a glimpse of my son before being taken to my room. It was a horrifying sight. He was covered in medical paraphernalia. He was intubated, with a machine breathing for him. There were IV drips, brain monitors (to detect seizures) and many other wires, tubes and devices covering his cold little body. And he was indeed cold, as they were chilling his core temperature down for three days in an effort to reduce secondary brain damage. He lay there on ice packs, eyes closed, just existing. I don't know how I existed. I am amazed one can endure such excruciating grief and not just crumble away and die.
The emotions swirling inside us were intense, scary and confusing, yet we had to function and be caregivers from day one. Oliver needed us to be there for him. We had no space to deal with our loss. Staying in the hospital's maternity ward with all the healthy mothers and babies was a cruel punishment for us. For ten days we were surrounded by proud fathers and beaming mothers who were resting and being pampered. The women glowed in the happiness of new motherhood. We did not belong in their world. In a daze Shami would help me hobble past all the new parents learning to bathe their perfect babies, past all the cheerful visitors smiling, laughing, and celebrating. On our way down to the NICU we would walk past breast feeding classes as I clutched in my shaky hand the colostrum or milk I had expressed drop by drop into syringes. It was to be frozen and tube fed to our baby when they thought he might be strong enough to tolerate it. But worse than staying there amongst the happy new families was being discharged: leaving Oliver in the NICU, driving home with an empty car seat, and stepping into our apartment without our baby was unbearable. I wished the grief would kill me.
Oliver stayed in the hospital for forty days. The beeps, smells, and sadness of the place are burned deep into our psyche. Shami and I spent almost all our time there. He would stay late, I would go in early, and much like this entire year, we survived only because we did not have a choice. On October 20th, 2007, Oliver was discharged, and we brought our injured little boy home.
Today, September 11, 2008, Oliver is one year old. He is a precious little boy, and he looks very much like his dad. He has an impish grin, and treats us to little laughs every now and then. He has lovely long lashes and gorgeous dark eyes, and when he smiles he reveals the cutest little dimple that warms our hearts. Even with all his discomfort and limitations, Oliver is able to find some time to be happy. He loves to go for walks outside, he enjoys his music, and his own sneezes delight him (ours, not so much!) He is a sweet natured boy at heart, in spite of all the obstacles he has to deal with.
The consequences of his injury, however, are severe and far reaching. An MRI at one week of age showed signs of significant hypoxia resulting in "profound and acute" damage to his brain, mostly the basal ganglia. This was confirmed by a second MRI at three months. At seven months a neurologist officially diagnosed cerebral palsy, predicting that it would likely develop into a
mixture of
spastic and
athetoid CP. He could not say for sure, but he indicated his concern that Oliver's cognition would be significantly impaired as well. We see a brightness in his eyes and an engagement with his world that makes us hope otherwise. No doctor will venture to make any positive predictions about Oliver's future. Everything is a game of "wait and see." So, although the present is beyond difficult, the future remains an unknown and even scarier place.
At one year of age Oliver's challenges are already great. He cannot roll over, sit on his own, use his arms, or grab a toy. He has never been able to feed by mouth, and receives all his food through a tube surgically inserted into his stomach. He continues to have a weak and uncoordinated swallow, and we don't know if he will ever be able to eat, drink, or talk. On top of this he suffers from terrible reflux, causing frequent vomits and extreme distress both day and night. At any moment he can go red in the face as his stomach spasms and churns, until he cannot hold down his food any longer. Trying to get (and keep) enough food in him is an unrelenting battle, and affects so many aspects of his life and progress. His breathing can be labored, and more serious medical intervention may be required if we find that he is aspirating fluid into his lungs. Every bad turn feels like the end of the world all over again.
Even a year on we have not had the time or space to mourn the child he should have been, or the life we should have had. Some days are better than others, but they are always a challenge to get through. We can still smile and laugh, and occasionally people even comment on how well I am doing. But there is a constant underlying awareness of our situation that has seeped into every cell of my body and has altered the way I view everything. Powerful emotions still overcome me and tears still flow freely, especially at night. But I weep with no resolution. I am told that for the rest of our lives we will not only live with chronic sorrow, but continue to jump between such feelings as anxiety, jealousy, denial, guilt, fear, anger, depression, joy and gut-wrenching grief. I know that in time I will learn to cope better with our situation, and perhaps I will adjust to our own version of normal. I understand that the unrelenting work and challenges will be rewarded with accomplishments, maybe big, maybe small. But he shouldn't have to struggle so hard for every little thing. We love Oliver. He is a super baby, and will be a super child and adult. He already makes us proud to be his parents. Yet, as we see those around us enjoying the path of life we long to be on, there remains an ever-present sadness for what we have lost, what we never had, and what will never be.
In writing this essay there is so much I have glossed over, and even more that I have not mentioned at all. I see how inadequate words can be. But perhaps it will help you understand why we have not posted too much to our blog, or been more in touch with all of you since Oliver's birth. We want to thank those of you who have reached out to us this past year. This sad turn of events has been an isolating experience and your caring words and big and small acts of kindness, from near and far, have meant a great deal to us. It has deepened even further our gratitude for having such loving and supportive families who, although living half a world away in North America and India, are there for us no matter what.
So here we are on Oliver's first birthday. It marks the end of a very hard year, one we have survived only because we had no choice. Perhaps the next year will be easier, but it's likely to be twice as hard. For now, there is no way to tell.
