New Horizons

Healing Daniel's Heart

Robert C. Van Kooten

"Where have you been?" my wife Jeneé asked me with tears in her eyes. "We have to go to Seattle right away! Something is wrong with the baby's heart." I had just come home from the store, where I had picked up some diapers for our new baby. Upon hearing those words, my heart sank.

Our son Daniel was born on July 2, 2003. He had a normal birth and was sleeping, eating, and gaining weight like babies are supposed to do. Jeneé had taken him to the pediatrician for his routine wellness checkup. In that examination, the doctor detected a slight heart murmur, which necessitated a trip to the hospital.

Before leaving, we gathered the family together and explained to Calvin (7), Taylor (6), and Aaron (3) that we were taking Daniel to the hospital because something was wrong with his heart. We told them that Oma would stay with them for a few days and that we would let them know what was going to happen. Then I prayed an emotional prayer with all of them.

Jeneé, Daniel, and I left for Seattle. All the way down to Seattle, there was not much talking, but there was a lot of thinking. I thought about my older brother Robert, who was born prematurely and died as an infant after only a few hours. My parents took us every year to put flowers on his grave on Memorial Day. They gave me his name. Was this what God had in store for us?

The Bad News and the Good News

When we arrived at Children's Hospital, we went to check in at the desk, and they put us ahead of everyone else in the line. They told us they were waiting for us, and brought us immediately into an examination room. "Do you know what's wrong?" we kept asking, but no one had an answer. All we could do was pray. The cardiologist and the nurses gathered around Daniel, and Jeneé held him down while they did all kinds of tests on his heart. We saw the doctor pointing at the screen at times and saying to the nurses, "Look at that! That's a good picture. Move it over here. There, do that again."

Finally, after about three hours, the cardiologist sat down with us and said, "Well, I've got good news and bad news for you. The bad news is that your son has a serious heart defect."

Our hearts sank.

"What's the good news?" Jeneé asked.

"The good news," he said, "is that it can be fixed. We are going to schedule him for open-heart surgery as soon as possible."

"If the surgery is successful, will he be able to play baseball with his brothers someday?" I asked.

"If everything goes well, he should be able to," the doctor replied.

We then started the process of admitting Daniel to the hospital. Because Jeneé was a nursing mom, she qualified to be in a sleep room inside the hospital. It just so happened (in God's providence) that a double room was available, so that we could both stay together. Since Daniel was healthy, he was not listed as in the most serious need of surgery. There were babies in much more serious condition who were scheduled first, and Daniel, we were told, would be worked in as soon as there was an opening. They put Daniel in intensive care with his own nurse and seemed to write down every move that he made. This began the long process of waiting for a time for surgery to open up.

Waiting for Surgery

"Why are you here at the hospital?" I asked the sad-looking young woman sitting next to me in the family waiting room of Seattle's Children's Hospital.

"My newborn baby was born with a heart defect, and he is now waiting for surgery," she said with tears in her eyes.

"Wow," I said to her. "We are in the same situation. Do you know what it's called?"

"It's called Total Anomalous Pulmonary Venous Connection (TAPVC)," she replied. "He was born nine days ago, and we took him home from the hospital perfectly healthy. Then all of a sudden last night he turned blue and was having trouble breathing. We called for an ambulance immediately, and they rushed him to the emergency room of the local hospital, but they did not know what was wrong. They did all kinds of tests, and we thought he was going to die. Finally they sent him here to Children's Hospital, where they were able to make a diagnosis. He almost died, and they are still not sure if he is going to make it," she said with tears.

As I listened to her story, it was hard for me not to cry. I told her that our son Daniel was here with the same condition, but thankfully our pediatrician caught it before he became sick. Throughout our stay, we shared our stories and experiences with her and her husband.

Daniel's cardiologist had told us that about 1 percent of all babies born in the United States every year have a heart defect. He estimated that only about 0.08 percent are born with TAPVC. He told us that because the condition is so rare, it is often difficult for a pediatrician or an emergency room doctor to diagnose it.

Hearing about the other child with TAPVC put everything in perspective for us. Our child went into the hospital completely healthy, and he remained healthy while waiting for his surgery. Nurses and others who came to visit him said that he did not even look sick. Yet, if our pediatrician had not caught it, Daniel's situation could have been much worse.

The next morning, one of the first phone calls I made was to Randy Bergquist, pastor of Emmanuel OPC in Kent, Washington. He told me not to worry about my pulpit on Sunday, as the local OP pastors would find a way to cover it, and that I needed to focus on Daniel right now. He then sent out a prayer request on behalf of Daniel to all the OP churches in the area. The next day, our OP friends and family in the area started to visit. One church friend, who is a nurse, came to pray with us and brought us some fruit. She told us that the hospital cafeteria's food gets old when you stay there a long time. My brother and his family, who live in the area, also made frequent visits and brought us bottled water and snacks. They also made the long drive to our house to pick up additional clothes for us.

We appreciated the many visitors who came by during our two-week hospital stay, because it helped us to pass the time. Jeneé was often busy nursing Daniel, so most of the visitors did not stay long. The short visits seemed just right. Being a pastor, it was sure different to be ministered to, instead of doing the ministering. We found that it was not so much what anyone said, but just the fact that they came to visit and showed they cared.

At times I found myself slipping into the pastor's mode. We met a family from Alaska whose child was now fourteen and had been born with a lung condition. After being home a number of years, he had been back in the hospital for two months. They had just received the news that after all these years, he was probably not going to make it. We met a mom next to us in the intensive care unit whose newborn baby girl was born without a chin and was facing months of surgeries in the hospital and a live-in nurse when she returned home. Her husband needed to work five hours away, so she had to take care of her two-year-old daughter while her newborn baby lay there too sick for surgery. We quickly realized how blessed we are with a loving family and a praying church family, and how lost some of them were. We had many opportunities to share the gospel.

One night, alarms went off at the bed of the baby needing the same surgery as Daniel. Soon we did not see the mother anymore, and we wondered what happened.

The Surgery

Finally, after a week, the doctor told us there would be an opening in the surgery schedule the next day. The surgeon told us that they had been doing heart surgeries for about thirty years, but that this was one of the most difficult surgeries that they do. He explained to us that Daniel's pulmonary vein, which is supposed to bring oxygen-rich blood from the lungs into the left atrium so that it can be pumped out to the rest of his body, was not connected to his left atrium. Instead, through an abnormal connection, the oxygen-rich blood was mixing with the blood coming back from the body for more oxygen and going into his right atrium. This meant that his body was not receiving enough oxygen-rich blood. That is why most babies who have this condition start to turn blue.

We asked, "How is it then that Daniel is not sick?"

"Daniel is a strong boy," the surgeon replied. "Right now his blood is going into his left atrium through a hole that newborn babies have in their heart. Daniel's body has found a way to survive." He explained that to do the surgery they were going to freeze Daniel's heart, so that it would come almost to a complete stop. Then he would cut the pulmonary vein and attach it correctly to the left atrium.

After talking to the surgeon, the serious nature of this surgery set in for us. We informed our family and church that Daniel was scheduled for the last surgery the next day. All day we sat by Daniel's bedside, wondering if this could be our last moments with him. We were thankful that our church elders, Rudie Duysings (Jeneé's father) and Duane Mattson (with his wife Ardy), came to be with us that day.

Finally, about 2:30 p.m., the surgery prep team came to take him away. They disconnected Daniel from all the machines and let us carry him down the hall to the doors of the surgery room. Jeneé's father walked with us, and just as we were ready to hand him over, led us in prayer. (I was too emotional to pray.) We then gave him to the nurse and said good-bye.

While Daniel was in surgery, a former member of my church stopped by whose son had also been born with a heart defect and had had surgery at the same hospital. I had once gone to Children's Hospital to visit him, and now he had come to visit me.

During the four-hour surgery, Daniel's nurse frequently came out to give us updates. "It's going well; things are going just as they should," she kept saying.

When it was over, she directed us to a private place, where we could talk with the surgeon. The surgeon came up to us with a huge smile on his face. The surgery had gone well. "There were big old veins in there to work with," he said. By God's grace, because Daniel went into the hospital healthy, the surgeon was able to close Daniel's chest on the same day as his surgery. This reduced the swelling and allowed him to come home one week early.

Four Years Later

It has now been four years since the surgery, and each year we have had to go back to Children's Hospital for an extensive checkup. This last time, his cardiologist told us that he was amazed at how well Daniel was doing. "You can hardly see his scar," he said, "and his heart is growing normally, with no scar tissue."

As we have reflected on the whole experience, we cannot help but give thanks to God. We know that other parents have much more difficult and sad stories to tell. God was gracious to us, as ours was over in about two weeks. The members of our congregation and Emmanuel OPC in Kent really ministered to us during that time in ways that we will never forget.

As a pastor, I had the unusual experience of having others minister to me. I've heard that some pastors don't do well at that, and we believe they miss God's blessing. When we returned, I told our congregation that perhaps one reason God had put us through the experience was so that I could know what it was like to be in their shoes. As I make hospital visits now, I know that God used it to make me a better pastor.

The author is pastor of Sovereign Grace OPC in Oak Harbor, Wash. Reprinted from New Horizons, February 2008.

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