I went into our meeting Friday with the medical team with the full knowledge that the news could be seriously bad. Six weeks ago, the neurologist and obstetrician had analyzed printouts of the grainy black and white ultrasound images of our unborn son, which confirmed what even this layperson could tell. That this new life growing daily within the woman who I met so recently but already loved more dearly than anything or anyone I’ve met in my 44 years, had a serious problem. Our dear son, who I’ve waited for decades to meet, was not well.
TokyoWife’s previous doctor first discovered the early indications of the problem, and speculated it may be hydrocephalus, a treatable condition characterized by an excess of fluid in the brain. This chance discovery during a preventative check-up was the start of our journey to the specialists and to our previous meeting in the same meetings room where we were now. The first meeting is now a blur. Yes, hydrocephalus. But that wasn’t the bad news. The bad news was that the brain wasn’t developing right. Where tiny wrinkles should be starting to develop, it was still smooth. If things didn’t improve, the neurologist explained, back in July, the baby would have problems. “What kind of problems?” I asked. Breathing, sucking, two of the essential jobs which our offspring would need to survive.
The doctors would have preferred taking an MRI first, but TokyoBaby was too active and refused to stay still long enough for this more accurate diagnostic tool. So, based on the grainy ultrasound images, our medical team had talked about the possibilities, and asked us to wait until September when the MRI would tell more.
Not knowing the future, I think we did our best with the hard choices. There was the dream house we turned down because it was two stories, and if our son were confined to a wheelchair, then it would be impractical. A new place to hold our expanded family was quickly found, rented and moved into. An apartment on the first floor. We searched the Net, in English, Japanese and Chinese for information. We looked into our souls and knew that we would love our child, no matter what limitations he had.
As with too many people, I had grown up with a father with his own sever emotional problems, and I looked forward to being a better father. Not having the experience of knowing a father who was capable of expressing, or even possibly feeling love, I was looking forward to enjoying the full experience of fatherhood, and making the world a better place for my offspring. From January when we first confirmed the unplanned (but unprevented and wanted) pregnancy, through July with the first indications of possible complications, each day was filled with excitement and wonder. After 44 years, I was finally going to be a father. These were the best days of my life. We had a wedding party where, surrounded by family and friends, we pledged to love each other forever. After the passing of the first trimester, with the morning sickness and rush of hormone driven emotions, we took a dream honeymoon to Bali, sucking in the tropical sun in a week-long retreat.
We planned our future and endless talked about our new family. Did we want a boy first or a girl? I didn’t care, but not having a brother, TW wanted a boy. TW was afraid that I would neglect her if I had a baby girl to love. It was in the 16th week that the ultrasounds showed we were going to have a boy. Until then, I didn’t really care, but suddenly I really wanted a son more than anything. What a dream. I will never forget those six months. The happiness and joy are beyond my ability to express.
Then, faced with all-too real possibility of raising a disabled child, I found I was ready to love the child and accept whatever limitations there were. At our now new home, the province-run children’s hospital an endless flow of youth, from infants to near adults. There was the tiny baby, with a huge, deformed, grotesque head and the cutest smile I’ve ever seen. Fussing and crying, for some reason she stopped when our eyes met. For the next few minutes, I played little eye games with her until she laughed. Her grateful mother deposited her on my lap and I babysat until it was time to go. There was a tall kid. Close to being physically old enough to go on to another hospital, and who would shriek and babble for reasons maybe no one will know. His father sat and comforted his as necessary. I first pulled back, but then thought that this may be my role in life. TokyoBaby could be the same in another 17 years. It would be for us to do the best with what came. I looked into my heart and said I was ready for whatever would happen
After we heard the news I made sure to tell TokyoWife daily, many times daily that I loved her and would always be there for her. I held her and assured her that I would never turn my back on my own flesh and blood. While that should be so obvious to any Westerner, unfortunately it’s not for many Asians. TW says that too many Taiwanese marriages don’t survive handicapped children.
Now, a long, but too quick six weeks we were again in the same conference room. They had performed the MRI the previous week and were now ready to give the diagnosis. The medical team now included a neonatologist, a specialist responsible for our son’s care after he’s born. The same neurologist and our obstetrician were joined by a note-taking nurse and another lady, later introduced as a care worker.
The teams spent an unbelievable 90 minutes with us. Completely explaining the situation, using MRI images and diagrams. They covered everything, answered our questions and did more that what we could expect. They started with the background information, gave their respective opinions and what our options were. They started with what we knew and added to what the MRI had told. They relayed what the outside experts had said.
But I didn’t need to hear the whole 90 minutes. I didn’t measure the time, but it took less than a minute for my heart to be ripped from my chest. I didn’t need to hear any words to know that the results were bad. Really bad. Much worse than what we had expected.
No, I could tell the news was the worst possible outcome when the neurologist started talking and our obstetrician, a kind lady no older or taller than my petite wife, took a deep breath and looked down. TokyoWife, hoping for the best, didn’t pick this up, but I knew that it was bad.
After symptoms were analyzed, he gave the outside expert’s diagnosis of atypical hydranencephaly, a rare condition in which the brain’s cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid. Unfortunately, this condition is untreatable and few children live longer than a year. A few live a couple of years. Our expert didn’t believe that expert. But thought it was an unknown condition which is worse.
They don’t know what will happen until the baby is born. There is a chance that he can breath on his own. And a chance he can’t. There is a change he can suck and a chance he can’t. Unfortunately, there isn’t a chance of him ever being normal or close to normal. There doesn’t even be much of a chance of survival.
TokyoBaby’s head is too large. That is the hydrocephalus. It’s the size of full term baby, although TokyoWife is only 34 weeks, as of today. The body is normal size, so the MRI images looked more like a caricature than a fetus. They need to get the baby out before too long. The neonatologist took over and went through the risks of too early of a birth. He says we need to wait until at least the 35th week. It will need to be a Cesarean, because his tiny body is too small compared to the head. Oh yea, he’s also breach, so that’s one more thing to worry about. We were given forms to sign later giving our consent to the risks.
We were told to start planning what to do. We need to be prepared to decide how much medical intervention to take. Do we allow recitation? Do we allow it to start, but then stop it at some point? How far to go? The team won’t know what to expect until the baby is born, so we need to go over all the options.
We meet again tomorrow to pick a date for the birth.
My mother will come from the States. Her sister will come from Taiwan. There are so many questions left. If he dies, what do we do? I’ve buried a father, two grandfathers, a grandmother, a cousin and a best friend, but never a son.
We take turns crying. First was TW’s turn. Yesterday was mine. This morning was hers again. Now, as I write this, it’s mine again. Friends and family have been wonderful. More offers of help. More thoughts and prayers.
For me, it’s so important that our son has a name. Even if he comes without a breath, or a cry, he will have a name and he will be remembered. I don’t know how long we’ll have to cherish him and to hold him, but we’ll always love him. He could stay with us for a few minutes, a few hours, a few days, months or years. The doctors don’t know. I do know that we’ll give him our full love for whatever time we have.
We won’t go to ball games together. I’ll never teach him how to ride a bike or light a campfire. We won’t go back to my hometown together. We’ll never wrestle together or play rocks, scissors or paper. I’ll never teach him how to golf or how to shave. We won’t laugh together or cry. He won’t hate me as the man who makes him go to bed or turn down him music. I’ll never see him grow or go to school. He won’t ever have a pet or a girlfriend.
Tonight is my turn to cry. To mourn the life I’ll never know or share.
