In early June 1996, I realized that I was pregnant with my third child. This was a complete surprise to me, and I knew that God must have a special plan for this child—little did I know.

I did not know exactly how my husband, Bob, would react to my wonderful news, so I waited a couple of weeks, until Father’s Day to tell him. On the way home from church that day, I said, “ Honey, God wants you to become a father again.” He was very surprised, but after the initial shock, he was very happy. We then told each of our families. Our biggest concern at that time was whether or not our house was big enough for our growing family.

On September 9, 1996, Bob, my mom and I anxiously watched the first ultrasound of our baby boy. I was twenty weeks pregnant. It was very exciting to see this unborn baby. Just after the ultrasound, Bob had to return to work, and I talked to the doctor about the ultrasound. He told me that the ultrasound technician could not get a clear picture of the baby’s heart and wanted me to go to the hospital for another scan. They had an opening that same morning, so my mom and I went to the hospital. I could not contact Bob at this time. The technician and the doctor were very serious, but the baby was moving a lot, and they could not get a clear picture, so they asked if we could come back later that afternoon for yet another ultrasound with yet another doctor.

I finally reached Bob on the phone just before this third ultrasound, but he was in a meeting and could not get to the hospital in time. My mom and I went back to the hospital and were soon in a room with four doctors as well as the technician. There was a lot of discussion amongst the doctors. Finally all the doctors left except one, and he just told us that there was a very serious problem, but he needed to consult with my obstetrician, and he would contact me the next day. Mom and I were both shaken. When Bob heard this news, he was upset and angry that we did not know anything more.

I remember our pastor calling that evening to see how we were doing. He told me that I would grow closer to God through this situation, and I told him that I had already. I had been praying for our baby all day.

Also, that day I started making a baby afghan for my little child within. It sounds crazy, but I needed to do something specifically for him. It was the only thing that I could think of at the time.

The next day, I called my doctor, and he told me that he wanted us to meet with a pediatric cardiologist and a maternal-fetal specialist and have another test called a fetal echocardiogram. The appointment was two and a half weeks away. He could not give me any information about the baby’s heart because he really did not know what the problem was.

The next two and a half weeks were the hardest of our married life. I kept thinking that things like this did not happen to “normal” people like us. They did not even happen to people we knew. We did not know what to expect, only that something was not right with our baby. We thought that maybe the baby might have to have some kind of surgery, and then he would be okay. What we found out was devastating.

On September 26, we met with the maternal-fetal physician, Dr. Cook, and the pediatric cardiologist, Dr. Donald Malcomb. After a fetal echocardiogram we were told that our baby boy had hypoplastic left heart syndrome. We had never heard of this before. It was explained that the left ventricle was too small and would not support the blood flow to the body. The aorta was small, and the mitral valve was not working properly. Dr. Malcomb told us that we had three options: 1) to do nothing— our baby would probably live a few days or maybe a week, 2) to have a heart transplant, or 3) a series of three surgeries to reconstruct the heart, which were still fairly new surgeries. He said that we did not have to make a decision right away because ironically, until the baby was born, he was fine.

We were in shock and did not even know what kind of questions to ask. Here we were expecting a perfect child, only to discover that he was fatally ill. We asked if there was any type of surgery that could be done in utero. There was not. We asked some questions about heart transplants. We were told about Dr. Edward Bove in Ann Arbor, Michigan, about two hours away who has very good results with the three-stage reconstruction. At that time we were also offered an amniocentesis to see if there was a chromosomal defect. We had not had that test with our other pregnancies and did not think that we could handle it right then, so we declined.

We also met with a social worker who tried to comfort us and help direct us to more information. She gave us Dr. Bove’s phone number and also told us that she could get us in touch with other couples who had faced this terrible decision.

We went home. I was numb, yet I could not stop crying. Bob went back to work and called his parents. My dad was with our other boys, Noah and Nicholas, so my mom, who had been with us at the hospital, explained it all to him on their way home from our house. When I asked her later how he took it, she said that he cried. I remember feeling awful that our families had to go through this, too. I felt helpless.

I turned to God a lot in those very difficult weeks. He was, and still is, my source of strength, and I do not know how I would have managed without the peace and comfort that came only from Him. I had been praying for God’s will and also that God would be glorified through this.

We decided that we should have the amniocentesis and had it done the next week. We almost backed out at the last minute because of the risks involving a miscarriage. It took about two more weeks for the results which yielded no chromosomal disorders. The genetics counselor was primarily concerned about Down syndrome.

We tried to find more information about HLHS, transplants and staged reconstruction. At first the heart transplant seemed like a good option to us. It would involve only one surgery easier than the reconstruction. It would also mean a new heart. We met with our pediatric cardiologist again but this time with a list of questions. He was very helpful. He told us that a lot of babies die waiting for a transplant because there just are not many infant donor hearts. He also told us the risks of the anti-rejection medications and that the transplant centers require patients to live close by for weekly visits. He told us that the best transplant center in the country would be Loma Linda, California. The second best was Chicago, three hours away from us. We learned that the success rate was about 70- 75%.

We also talked about the staged reconstruction surgeries and about Dr. Bove at the University of Michigan Hospitals. Dr. Malcomb told us that the success rate was slightly higher than the transplant, about 75-80%, although there were three surgeries involved. The first one would be about four days after birth, the second four to six months, the third eighteen to twenty-four months. Some of these statistics Dr. Malcomb had explained the day he told us that the baby had HLHS, but my mind could not comprehend everything at that time.

We were told that if we chose the staged reconstruction, then we could deliver our baby in Grand Rapids and be transported to Ann Arbor a few days later, or we could deliver in Ann Arbor. We were told that because of my previous Caesarean section, we had a choice of having Caesarean delivery or a vaginal birth, which meant more decisions.

During this time I was going back and forth to my obstetrician, Dr. Stephen Hickner, and the maternal-fetal specialist. Although my pregnancy was not high risk, the baby would be high risk immediately following the birth. I ended up seeing all three of the doctors in the practice, and each time I had to explain everything that we knew, where we were in the decision-making process and all about my past pregnancies.

At my obstetrician’s office the normal policy is to see each of the four doctors in the practice at least once so that you would know them in case they were on call the day you went into labor. At this point I was considering a Caesarean section to avoid all of the doctors and hospital teams in the delivery room with us. If I had a Caesarean section, Dr. Hickner would be available, and we could avoid seeing the other doctors. Also, if we decided to have the birth in Ann Arbor, then there was no point in seeing all of the different doctors. I was getting tired of explaining the whole situation each time I had an appointment, which was every week for awhile. During this time we received floods of cards, notes and phone calls expressing support for us, which gave us an overwhelming sense of love and peace. Most people tried to understand what we were going through, but they could not. It was really nice to talk with some couples who had gone through having a child with HLHS. They were the only ones that could truly understand what we were feeling.

In early November we went to Ann Arbor to meet with Dr. Bove. We had a list of questions for him about the staged reconstruction surgeries. He was very kind and caring and answered all of our questions so that we could understand him. He told me that I would probably be able to breastfeed after the surgery. He also explained that he was concerned about the atrial septal defect that our baby might have. This would mean an immediate heart catherization, putting a balloon in to open up the ductus arteriosus. We asked him if he felt that we should deliver the baby in Ann Arbor, and Dr. Bove thought that it would alleviate some of the transport risk; in addition, if the baby needed the heart cath, the doctors would be completely ready for it. We also asked him a little about transplants, and he preferred to do the staged reconstruction first, leaving the transplant as a last resort.

We took tours of the hospitals and the Ronald McDonald House while we visited Ann Arbor. We met with a social worker, Barb Shaltis, who told us that they see a lot of HLHS babies each year and that Dr. Bove has great success with the surgeries. We also stayed overnight in the Med Inn that is connected to the medical complex.

I guess it was while we were speaking with Dr. Bove that Bob and I realized that our decision was being made. We decided to have the staged reconstruction. We went back and forth as to where to have the delivery but finally decided to have it in Ann Arbor. We did not want to be separated from our baby. Our family and friends would have to drive two hours to visit us, but we decided it would be best for the baby. We also decided that the heart transplant would be our backup option should the staged reconstruction not be successful.

We met with an obstetrician, Dr. Margaret Punch, at the University of Michigan Hospital who would be handling my case. She had many patients deliver HLHS babies. The medical complex was prepared for this situation. We set the induction date for January 23, 1997. We needed to check in one day prior. The baby’s surgery would be around three to five days after birth, and the average recovery time for this surgery was ten to fourteen days. We were planning on being away from home for two to three weeks.

In late November we started making plans for the delivery and the baby’s surgery. My parents told us from the beginning that if we needed to be in Ann Arbor they would be willing to take care of Noah and Nicholas for us for as long as we needed. It was such a relief to know they would be cared for.

I started making lists of things to bring for the delivery, our stay in Ann Arbor and our other children. I rented a breastpump to take with us. I made a phone list and an email list for contacting our family and friends from Ann Arbor. Our church was very gracious and loaned us a notebook computer so we could email from Ann Arbor. We saved a lot of money not having to make phone calls. Everyone we knew was long distance from Ann Arbor.

My parents decided to bring Noah and Nicholas to Ann Arbor on the day of the delivery and were planning on staying until after the surgery. It was about this time that we named our baby. We had a lot of people praying for him, and some expressed that they would like to pray for him by name if we had selected one. We finally decided on Jonah. Jonah, in the Bible, was a man who learned to love and trust God—that was what we hoped for our baby.

On January 22, 1997, we dropped Noah and Nicholas off at Grandpa and Grandma Smith’s house along with a carload of their belongings. We then left for Ann Arbor and checked in at the Med Inn. We started learning our way around a little and met with Barb Shaltis. Neither Bob nor I slept very well that night. We knew we were about to have a baby but also that once he was born he would be in trouble. This was very scary. He was so safe inside me that I wanted to keep him there as long as I could, and yet I was getting tired of being pregnant.

On January 23, labor was induced around 1:00 p.m. and continued all day without a baby. My parents had brought the boys down, and they were so excited. They kept asking when they could see Jonah. We stopped the Pitocin and were going to try again in the morning. This was frustrating because I had been induced with my first child, and labor went very smoothly and quickly.

They still wanted to monitor me off and on during the night, so it was another sleepless night. January 24 was another long day. Labor had started getting stronger, but the baby’s head had not dropped, so the OB was reluctant to break my water for fear of cord prolapse. Finally around 10:00 p.m., she decided to break my water but prepared me for a Caesarean section just in case the cord came down. Everything was fine, and about an hour and a half later, Jonah was born on January 25 at 12:50 a.m. Bob and my mother witnessed the event. Jonah weighed seven pounds, thirteen ounces and was twenty-two inches long. His APGAR scores were eight and eight, marked down only for color.

I asked the doctors if I would be able to hold Jonah after his birth, and they said no because there would be a team of doctors waiting for him and time was critical. When Jonah was born, I reached for him and something wonderful happened: Dr. Punch picked him up and laid him on my lap for just about ten seconds—that was the most wonderful thing she could have done. I told him that I loved him and that there were a lot of people praying for him. I told him I was sorry that he had to be taken away, but the doctors would do everything they could to help him. Then he was gone. A doctor was waiting during the delivery with a blanket, and he whisked him out of the room. They told me that he was just across the hall. I was so happy. I got to hold him! I did not think that I would get to hold him until sometime after his surgery. This was so wonderful. It was so much easier to let him go.

Exhausted after three sleepless nights in a row, we went back to my room around 2:00 a.m. and fell asleep waiting for the cardiologist to meet with us. At about 4:00 a.m. he finally came and said that Jonah was doing very well. They put lines in his belly button and an IV in his arm. They were giving him prostaglandin to keep the PDA open, and he was stable. The atrial septal defect was not causing any problems, and they did not anticipate any. A nurse wheeled me down to see Jonah. He was beautiful. Even though Jonah was in the Neonatal Intensive Care Unit with all the medicine lines, he looked great. He was bigger than most of the other babies in the NICU. All of the nurses and doctors kept saying that they had been waiting for two days for this baby to be born.

The next few days were a blur. I had a severe spinal headache and almost fainted when I was on my feet. I finally received a blood patch and that relieved the headache, but two days later it came back. Another blood patch worked again.

Jonah was moved to the Moderate Care Unit in the Mott Children’s Hospital, in another part of the hospital complex. We were able to hold him, and I was also able to initiate breastfeeding. At first Jonah did very well, but he was so sleepy all the time that he was mostly tube fed using what little milk I could produce plus formula.

The night before surgery, Bob and I prayed over Jonah. We prayed for God’s will for him and for the doctors as they held his little heart in their hands. We prayed that God would be blessed and glorified in this situation, no matter what the outcome. Also that night we toured the PICU and saw babies just coming out of heart surgery so that we would not be quite so shocked seeing Jonah after surgery.

Jonah had surgery when he was four days old. We walked down with him as far as they would let us, kissed him and said, “Goodbye,” maybe for the last time. It was so hard to let go this time.

In the waiting room we tried to keep the children entertained and to keep our minds off what they were doing to Jonah. Finally the doctors came and told us that they were done, that he was okay, but he had some bleeding. We were able to see him for about two minutes, then they made us leave so they could make decisions about treatment. Two hours later Dr. Bove came out and said that Jonah looked great. I asked about the bleeding, and he said, “It just stopped!” What an overwhelming sense of relief and joy! We praised God. He had chosen to save our baby!