Lindy Davidson

While we were making the rounds with the pediatric and genetic specialists, we were continuing to see Dr. Al-Malt and I was continuing to have amnio infusions. Will had a very simple-to-explain but hard-to-fix problem, he was not peeing. Fluid went into his bladder, but fluid did not come out. In order to relieve his bladder and kidneys of the pressure, and in order to keep fluid around him, I had to have the amnio infusions. The sonographer would find Will on her screen, Dr. Al-Malt would pick a spot for his needle based on what he saw on the screen and I would take it like a… well, like a pregnant woman desperately trying to save her baby.

After a few of these infusions, we started trying for a more permanent solution, the stint. The goal was to place a “pig tail” stint in Will’s bladder, so it would have a spout so to speak. The device was tiny, maybe ¾ of an inch in length and ¼ inch in width, a tiny sterile tube wound up like a spring. Inserting this stint was the challenge. Dr. Al-Malt used a troker, shaped like a ball-point pen, to attempt to insert the stint in Will’s bladder. Of course, my belly was the barrier in between, and so the troker went through me before it got to him. This was slightly more painful than the regular needle… ok, it was much more painful!

It was while we were trying to insert the stint that Dr. Ricketts entered the picture. He was a fellow working with Dr. Al-Malt. Not a fellow as in the old fashioned way of saying “guy,” but as in a doctor doing a fellowship in perinatology. Dr. Ricketts went to church with some friends of ours, so we had an instant point of connection. He was always there for the infusions, and we grew to appreciate his kind eyes (that’s all you can see in an operating room.)

In order for the doctor to put the stint into Will, he had to be lying in the right position. This was a challenge. More than once, Will would be in the correct position before we went into the OR, but would flip somewhere in between the office and the hospital. I even had an epidural one time in hopes that he would relax a little. It never worked. Will and I both have scars from the attempts, but no luck with the stint.

The infusions were as far apart as 12 days and as frequently as every 5 days, depending on what my fluid level was. Will was on sonogram constantly. I was getting to know that face, and I was sure I would burst if he didn’t make it.

The idea that I would lose Will during the pregnancy was in the front of all the doctors’ minds. There is a small chance of going into labor with every amnio, and I was having them weekly and sometimes more often. In addition to this, no one knew how long Will had been without fluid. Had I done nothing, I would have lost him within days. We were doing all we could to save him, but many people doubted whether or not it would be enough. Sometimes, I just knew he would be ok. Sometimes, I feared the worst.

In addition to the many doctors we consulted, we also saw a genetic counselor. I never even knew this position existed, but apparently, there are people who are trained to draw up your genetic history and tell you the chances of having a genetic problem in your children. She was at Arnold Palmer Hospital for Women and Children, down the street from where I would deliver Will, and where he would later become a patient. When Adam and I went to APH, we had to sit in a waiting room to register before seeing the counselor. We sat in a room full of other parents with medically needy children. It was sobering, as if we needed to be sobered. Later, Adam told me he felt as if he’d suddenly become a member of a club he hadn’t wanted to join.

The club is a strange one, and none of us ever planned on being in it. There are many parents and kids in this world who make their second home in the hospital. Nurses are familiar friends—like family in many cases. The vocabulary of medications and complex treatments is as natural as the rhymes of Dr. Seuss or the slang of the playground. And even when the kids come home, there are marks of the hospital all around. When an IV pole with a stuffed frog hanging from it is a normal fixture in the dining room, you’re definitely a member of “the club.” That day, we were viewing “the club” from the outside. Our baby was still on the inside and we were simply speculating about what life would be like with a medically needy child. I have since learned that the anticipation, in many ways, is much worse than the reality. For now, let me just suffice it to say that there is real, wonderful, dynamic life as a member of “the club.” More on this later.

The meeting with the genetic counselor was actually the most hopeful of all our meetings. She told us we were genetically “unremarkable.” In other words, there was nothing to say about us. We didn’t have any genetically interesting people in our families. Additionally, she gave us a different perspective on having a child with special needs. Up to this point, it seemed as if a lot of people had been mostly sullen about our situation. We felt tragic in every way. And certainly, there is plenty of difficulty in life with a disabled child. On an average day, though, Will is the easiest of my three kids. This genetic counselor assessed a greater value to the life of the “atypical” child. We walked away from her office feeling lifted up instead of beaten up. For the first time in my life, I was thrilled to be “unremarkable.” Later, a pediatric genetic specialist would tell me there was a better chance of having another child with a different problem than there was of Will’s problem repeating itself. That was kind of comforting, in a doctor-speak sort of way, but I wish he’d hired the genetic counselor to rephrase that diagnosis for him!

I left the procedure room that day with a great sense of focus. I had worn a ball cap in and as I put it back on to leave, I remember thinking it was time to put on my “game face.” My dad is a baseball coach/trainer/Jedi of sorts so I have this competitive nature I get from him. I knew I was going to have to fight for this baby, but this fight was different. I had WAY more enthusiasm and strength for the days ahead than I could possibly have mustered. There was something else inside me.

From the moment we heard that Will’s life was in danger, every ounce of strength I had was gone. My own personal steam, as I call it, is based on a sense of control, and this was a situation over which I had no control. Amazingly, as my own strength left, I found something much greater to stand on. This wasn’t merely steam, this was high octane jet fuel, if there is such a thing. I had spent three years of my life in seminary learning about God, the power of the Almighty. Jesus, the conqueror of death itself, had left something even greater for his followers. It’s called the Holy Spirit. Now we Presbyterians like to talk about the Holy Spirit by focusing on the Greek and Hebrew names for it and by dissecting sections of Scripture where wind and air are mentioned. Living out of the power of the Holy Spirit, now that’s uncharted waters for us.

I had begun to feel the presence and the power and the energy of the Holy Spirit working in the circumstances of my life, and this is how I had put on my game face. Dr. Al-Malt had all but insisted we get a second opinion on our case. When I asked him to send me to a doctor who wouldn’t tell us to abort, he said he had no one to send me to. It was clear to everyone that this was the team assembled to spare Will’s life. No other doctor would be considered.

Dr. Al-Malt did require us to speak to several specialists for premature babies. This was extremely difficult. The first doctor we spoke with was Dr. Lugo, a neonatologist. He was very kind and the head of the Neonatal Intensive Care Unit (NICU) at the hospital where I would deliver. His words of warning were tough to swallow, though. He told us that the greatest risk for a child without fluid around him was that the lungs may be compromised. He described the spectrum of damage that was possible. The worst possible scenario? Hypo-plastic lungs. Will would be born, take one breath and his lungs would explode. This was unthinkable to me. I don’t know how many tears I shed over this thought, but it haunted me for the remainder of the pregnancy.

We also met with Dr. Keating, who is now Will’s pediatric urologist. Dr. Keating explained to us that Will would be a great kid, but a sick kid. He told us about dialysis, which we knew was a possibility from the very beginning. We liked Dr. Keating because he even shared a personal story with us from his own life. He was very warm and caring and continues to be this way to this day, (even though I yelled at him one time about something that happened with Will in the OR.)

This is really our story, Will’s and mine and Adam’s and a lot of other people’s; but since he will never remember the things I remember, and since this story would not exist without him, I call it Will’s story. It is for him, but he gave it to us.

I had always known I would be a mom, but it wasn’t the thing that consumed me like other women that I have known. I am driven toward achievement. I like to be recognized as intelligent and competent and these idols of my heart have always pushed me in the academic world.

In 2001, I finished my Master of Divinity and began my first full time job at the age of 26. My husband of 6 years and I decided enough was enough and we should start having kids. By November of that year, I was pregnant, nervous, hungry and excited. Everything was going great. The night I found out I was pregnant, I told Adam that I realized I would always have this new sense of angst for another person. There was a sudden awareness that I was not only in charge of myself, but I was fully responsible for another life. I had become a mom.

One Friday in March of 2002, I had my first sonogram. We were so excited to find out if it was going to be a boy or a girl. We had the names already picked out, having had six years to discuss it. The day of the sonogram was horrible. The sonographer would not allow Adam to come back with me and there was no video recording capability like I had been told there would be. The sonographer was very unemotional and did not talk to me. I was in pain because I had to pee so badly and the sonographer was so utterly silent that tears began to roll down my face. Finally, after what seemed to be an eternity, she allowed Adam to come back and she printed out two or three pictures of the baby’s face. She couldn’t tell us if it was a boy or a girl and acted as though we were very naïve to think she would be able to see that. I was quite put out. My expectations of a “fun discovery” had been squelched by this icy technician whom I would never meet again.

The weekend that followed involved helping our friends Chris and Miriam move into their apartment in Orlando and watching a shuttle launch from a Walgreens’ parking lot with them.  I remember wearing overalls.  I might have forgotten these details if what followed had not been so harrowing.  At the time, I did not realize that these would be the last “normal” activities I would participate in for a very, very long time.

The following Monday, my doctor’s office called to tell me there was a small problem that showed up on the sonogram. The nurse told me my fluid was a little bit low and they wanted me to see a specialist. She had already scheduled the appt for me for the next morning. I called Adam who was at school (he had begun seminary as soon as I completed it). He came home to comfort me, and we both thought we were over-reacting a little.

The next morning, we went to see Dr. Al-Malt, the perinatologist. The people in the office were very warm but clearly concerned as soon as Melissa, the much friendlier sonographer, began working. Dr. Al-Malt called us into his conference room, a very small room with a round table, 3 chairs, a tv/vcr and a box of tissues on the table.  The room said it all, and it was here that the doctor told us the hard truth. There was no amniotic fluid around the baby, it was all trapped in the bladder and backing up into the kidneys. We were going to lose this baby. The anvil had fallen on our heads. It was the deepest wound I’ve ever felt.

“There is one thing you can do, though,” he said. He explained that he’d had some success with this procedure and although it was very invasive, there was a chance we could save the baby, but some damage had already been done. He estimated significant damage to the kidneys and the possibility of damage to the lungs. He required us to think it over for the morning and come back to the hospital in the afternoon if we decided we wanted to try. I don’t remember ever considering not doing it. All I could think was, “If there’s something you can do for my baby, do it!” I remember sitting on the couch at home next to Adam that day. I don’t remember what we said or if we even said much at all. I remember we were together, though. I remember we were both completely undone. I remember that I suddenly knew deep maternal love for someone I’d never met. I remember wanting to save his life just as much as I would want to save the life of any of my children now.  I remember the desperation and the shock.

We showed up at the hospital that afternoon. Dr. Al-Malt, Melissa, Adam and I went to a little room where I put on a hospital gown and laid back on a chair of sorts. Melissa found the baby on her sonogram machine and focused in on the bladder. It was the same size as the baby’s head. It was full. Dr. Al-Malt inserted a needle into my stomach and into the baby’s bladder to extract the fluid. After he had done this, the difficult work began. He had to find a pocket of fluid around the baby in order to put more fluid around him. There was almost no fluid left. Finally, he found a pocket that was about 5mm in size just under the baby’s butt. It took some time, and it was very uncomfortable, but he finally got his needle inside that pocket and began to infuse fluid around the baby. Immediately, the little person inside me began to shake his bottom in the very first wacky dance ever witnessed. It was then, when he could move around, that we confirmed he was definitely a boy. We told the world, his name is James William Davidson. We’re calling him Will.

Admittedly, I have been really bad at keeping up my blog.  Of this I am keenly aware.  It was recently brought to my attention that this is not a free blog, though, and if it is worth keeping, it might also be worth posting something of value now and again.  Yes, I see the point.  It’s true.  I’m a lazy writer.  ”How can I use the summer to work on this?” I thought to myself.  So here is my idea, to the few faithful who actually care.  I am going to post up bits of my story about Will over the next days/weeks/maybe months.  It is sort of a writing exercise and sort of a ploy to keep my blog.  Hopefully, though, it will provide something interesting to read for … well, the invisible “readers.”  Perhaps it will be interesting enough to bring in more readers.  Imagine that!  Either way, I will give it a go and see what happens.  Keep me accountable, faithful few.