My son Jacob would be seven now, but he died at birth. Jacob had holoprosencephaly, a genetic deformity that occurs in one of every 58,000 births. The result was that he had a substantially underdeveloped brain. His lungs weren't very good either, his thumb was disjointed, his face was slightly distorted, and there were other problems.
Three months before his birth, we found out that Jacob would not be normal. I still remember sitting in the doctor's office with my wife when we got the news that our second child was deformed. My wife and I held hands and solemnly, passively took in the life-changing news. The counselor was very gentle and kind. When she was finished with the initial bad news, the three of us sat in silence for several minutes. Then came the questions. Will he die in the womb? Can he live on his own? What would his life be like if he survived? Would he be a vegetable? The counselor told us that he had a very good chance of living right up to and through the birth; but that afterward, because of his diminished lungs and insufficient brain capacity, he had close to a 100% chance of dying right away. Nevertheless, there was a possibility that he could live. If he did, she said, his life would consist of being bed-ridden, never walking, never talking; and that he probably wouldn't even know who we were. She then gently and caringly asked if we wanted to abort the baby. Without hesitation, we both said no. It was never brought up again.
Of course, I must confess that I did not like the idea of possibly having to care for a child with such profound problems. I wondered how it would affect me and how difficult it would make my life. Because of these thoughts, I then had to wrestle with the guilt of being so selfish and unloving. Being faced with weighing the options of being "inconvenienced" and taking care of a profoundly needy child and comparing it to my very strong commitment to Christ brought an uncomfortable reality to the fore-front. In short, I was selfish. That is one of the "benefits" of our trials. They show us what we are made of.
Abortion was simply not an issue. We were going to have the child. So, my wife and I did the only thing we knew how to do at that point. We prayed. We asked the Lord to heal Jacob. We asked Him to show His power and might and glory in healing our son. We also prayed that if Jacob survived and was unhealed, that the Lord would give us the strength and love to take care of him for as long as was necessary. We prayed. Members of our church prayed as well. We waited.
The Lord did not heal Jacob.
Some of my non-Christian in-laws politely let us know that we should abort Jacob. They were upset that we were going to go through with the birth--having my wife suffer the great pain of childbirth only to deliver a child that would die. On top of that, there was the painful event of the funeral afterward. I had absolutely no financial ability to care for such a child if he lived--let alone pay for a funeral. To make things worse, my gross income (not net) for that year would turn out to be $16,009. I had a wife, one child, and school loans to pay. Logically, abortion seemed the right thing to do. To my in-laws, it made absolutely no sense at all to carry the child to term.
The Lord begins to provide
Debbie was a Godsend. She was a member of the church where I was an assistant pastor at the time. Four years earlier, she had helped another couple deal with the exact same issue: a "hollow-baby." So she already had information about "hollows," including survivability rates, pictures, statistics, and something else very special: love. She selflessly gave us her time, allowed us to call her whenever we wanted, and would sit with us when tears would fill our eyes as we discussed the coming events. And if her love and patience weren't enough, she was also a nurse. In fact, she was a nurse at the very hospital where we were going to have Jacob. We asked her if she would be there with us when Jacob was born. She lovingly agreed. It warmed our hearts to be blessed by her care and see how gently the Lord was providing for us through her. She helped ease the pain, and I thank the Lord for her.
The most difficult thing I've ever done in my life
I've undergone some extremely painful physical things in my life. You see, I'm cursed with a partial resistance to anesthesia. I've undergone a root canal and a vasectomy where the anesthesia failed to do its job. I've suffered pain that brought me near convulsions, caused me to pass out repeatedly, and sent me into shock. But if someone were to ask me what was the most painful thing I've ever experienced, I'd have to say it was when I had to arrange for my son's funeral--two days before he was born.
I sat in the office of the funeral director, who was a Christian, and he patiently, lovingly asked the necessary questions. I was only able to answer between sobs. It took about 20 minutes to get through the session and sign the papers. About five minutes of it was actual talking. When we were finished, I felt as though I had been beaten up. I was wasted. By God's grace, Debbie was with me because my wife stayed home with our daughter. She drove me home afterward. Recovery took hours.
Birth is a wondrous thing. The first time I saw my wife give birth, I couldn't believe what I was seeing. Her body changed, moved, heaved; and after hours of rhythmic agonies, she brought our first-born into the world. I was amazed and elated with what I had just witnessed. There I was, a bystander who had just watched his wife undergo great suffering to bring life into the world. She was incredible. She was a woman. I felt guilty for not being able to share her pain. All I could do was speak to her, support her, be there, and help in whatever feeble way I could. But it wasn't me. It was her . . . and the baby. It changed me permanently and altered my perspective of women forever. There she was, the mother of my child, breastfeeding our daughter. She had just given birth, and now she was giving further life to our baby by nourishing her from her very body. I was silenced and humbled by what I was then witnessing.
Jacob's birth was no less amazing and wonderful. My wife suffered the same agonies as before. I did my best to help her; but we both knew that Jacob would not last and that we would have him for a very short while.
Jacob emerged into the world, and immediately the doctor gave Jacob to my wife. We heard him gasp for air and then fall silent. There was no crying of a baby. There was just silence. We wept.
Jacob laid upon my wife's breast; and after a few minutes, he stopped moving. There wasn't anything we could do. Debbie, the nurse who had been with us the whole time, took Jacob into her arms, laid him on a small portable bed, and listened to his heart. It was slowing. I remember looking into her eyes.
It took a short while for Jacob to pass away. But before he left us, I took the stethoscope and listened for his heartbeat. It was slowing down until, finally, I heard the last one. He was gone.
As I stated above, we had no money. The funeral would cost us--as would the headstone. We had nothing, but the Lord provided. The people of the church came together to cover the cost of the funeral. We were able to get a Christian musician to sing at the funeral, and over 120 people came. A professor friend of mine from seminary did the service, and he preached to the living. A lot of unbelievers heard the gospel. It was a good time--as good as you can have in a situation like that.
A man I did not recognize, who was dressed in work clothes, approached me after the funeral while people were still milling about. He introduced himself. He was from another church I had preached at six months earlier. They had heard of Jacob. He handed me a check for $1,000 and told me they wanted to help with the funeral expenses.
Jacob has a headstone now.
What was I left with?
My wife and I have a picture of Jacob and a frame with his handprints and footprints in it. We have a son with the Lord and look forward to meeting him one day. It makes me smile.
I've heard that around 70% of marriages end in divorce when the death of a child is involved. Not so with us. My wife and I grew closer to each other and to the Lord because of His provision through the ordeal, the love and support we received, and the peace that filled our hearts during the whole process. I am very thankful for that. Because of the funeral, we were both able to say our goodbyes to Jacob and have the matter rightfully settled. We have absolutely no regrets at all.
The Lord left us with a strange kind of peace. I can't explain it; but having done the right thing, I have peace with myself, with my wife, and most importantly with God. I look back to that difficult time not with pain but with appreciation. If I think about it long enough, it hurts; but the hurt is not what is most remembered. Not at all. I recall the kindness of people, their support, the love for a son, the provision of God, the increased bonding with my wife, and much more. As a bonus, my wife has been able to sit with women who have had the same problem with their babies. She has been a tower of strength and love for them.
If we had aborted Jacob, it would have been easier; but I would have been left with guilt. I would have deprived the Lord of an opportunity to heal. Even though He chose not to heal Jacob, God provided peace, hope, and love throughout the whole process. I have nothing at all to feel guilty about. I don't play any psychological games trying to "keep my sanity." I never wonder if I did the right thing. I don't have to avoid the memories of Jacob because they are painful. If anything, I use them to help me love others (because of the love I've received). I use them to help me be more appreciative of the children I have now. I use them to help me remember how much God loves me even though I do not know why He allowed us to go through it.
And, I love my wife even more. I've gained a greater respect for her and am very proud to be married to a woman with such strong, godly convictions that she chose to live by them instead of abandoning them when they became inconvenient.
In short, I've seen how blessed I am.
I hope this has helped you see that not all is lost with a deformed baby. God can bless through it all and show Himself to be more real.