Jerry Adler writes,
There are two phone calls that will haunt my dreams forever, that evoke between them all the hope and fear of the most passionate experience of our lives, the birth of a child. The second of these calls I made myself, to my own parents, the night of the day my younger son was born. I was 37 then, and it had been years since I had called on them for help or advice on any subject except income taxes. But I had just watched "my child"come into the world, rigid, his face gray as dusk, contorted in outrage at finding himself in a place that seemed to have no oxygen. I had run alongside his crib, down the empty corridors of the hospital, and then waited in the cheerless hall//while the doctors cut a hole in his throat to let him breathe. I had seen him sleeping in his nest of wires and tubes//in the urgent glare of intensive care, watched the jagged green shadow of his pulse on the screen above his crib. When there was nothing more for me to do in the hospital, I went home and dialed a number in Florida." "Oh mama, I said, I'm so scared."I'm still scared. I am scared of the thin cotton ribbon that goes around my son's neck// and holds in place the plastic tube through which he breathes. Cut the ribbon, the tube falls out, and he asphyxiates before your eyes. I know this is true because once, in the hospital, they let me change the tube//so I would have some practice for an emergency. I got everything ready and cut the tie and//pulled the old tube out of his neck, and then, because no one had told me where to put it down, I held it in my hand for a couple seconds. In those few moments my son's face turned blue as denim. ....I am still scared, even though he has been home now for more than a year - his hospitalization lasted about a Summer - because he is 18 months old and cannot use his mouth to talk or to eat, cannot sleep except with a nurse sitting in his room to watch for his voiceless cries, cannot go anywhere without a checklist of medical supplies//sufficient to outfit an expedition//to the headwaters of the Amazon...And I am scared because the day is drawing closer when he will understand that this is not how life is meant to be, and he will' ask my why. Now that he is at an age when he would normally be saying a few words, he is starting to pick up sign language quite quickly. Someday we are going to sit down and have a conversation. I am afraid, however, of what he will say."Obviously, Jerry Adler did not disappear. But why do some (maybe many) dads disappear? Not disappear physically, although some dads (and some moms) do split the scene. I mean the father who disappears emotionally, says "Everything is fine. Why get upset?"; and he goes off into extended hours at work. Why does this happen? Now, I like to try to use what we do know about the traditional stereotype of men to try to understand the problems faced by "typical" fathers during a high-risk birth. I start with the premise that everyone does what they can to minimize suffering. When faced with problems, women have been traditionally taught to talk about their feelings and express themselves; traditional men, for better or for worse, have been taught to do something to fix the situation. In psychological terms, women are more accustomed to using emotion-focused coping; men are more prone to use problem-focused coping. The special difficulty for the traditional father is that there is nothing in a high-risk birth that he can fix to make it all better and reduce his family's suffering. Problem-focused coping doesn't work (except when expressing anger can correct mistakes made by the medical staff). So our traditional father is at a disadvantage because he has to use emotion-focused coping, but he doesn't know how to express himself well. So what does he do? The only thing he knows. For better or worse, he clamps down and denies his feelings. He believes that things are fine, and immerses himself in work or hobbies to avoid the pain in his life. Perfectly understandable, even if it may not be the best thing for his wife. And you know what? The differences between the coping styles that can cause turmoil between husbands and wives after a premature birth, these same differences may have been part of the initial attraction for the couple to begin with. Now isn't there something nice about a man who can take charge of things and make them right? And isn't there something nice about a woman who isn't afraid of expressing her tenderness for me? I hope that you get the sense that I wish more men would be more emotional. Even though I believe that fathers would adapt better to the crisis of a high-risk birth by risking vulnerability and sharing feelings, I think we can understand the father who (for better or worse) doesn't express his fears, believes that everything is fine, and disappears into work. If I'm that traditional father, denial of emotional upheaval helps me. It's a way of me keeping my family together (although perhaps at the price of not supporting the feelings my wife may have). And doing it this way makes more sense to me than getting all emotional whenever anything may go wrong. If I look through that father's eyes, I know full well that my wife almost died. Our baby almost died, or did die, or is handicapped. Our family was thrown into a shambles, our finances destroyed. One way to protect my family is to be very controlling. And believing that things are working out fine, is one way of controlling my life. If I'm that father, I remember when you said you liked how I took care of you. Well I'm doing the best I can. For better or worse. The first day I visited Chris in the NICU I was lucky enough to get some advice from a neonatologist, John Glaspey, who told me that I had a unique opportunity in this crisis as a father. I could do something better than anyone else could. I could be the link between Chris and my wife, Lauren, who was in a different hospital. I could help Lauren believe that she really had a baby, and I could help her to get to know Chris despite the 10 miles between them. The most frequent complaint I have heard from fathers is that they hate the feeling of being powerless during the emergency of a high-risk birth and the NICU stay. We want to make things right, but we feel we can do almost nothing for our wife and baby. Dr. Glaspey gave me something to do, and I jumped at the chance. Actually, being the link between your wife and your baby is something that many fathers do. But they don't realize how important it really is. So I ask you to please let fathers know that they have a special role to play in keeping all of this craziness somehow a little bit manageable. Many fathers may not believe you at first, but don't give up in trying to be persuasive. Fathers, like mothers, often feel that there is so little they can do. But convince fathers to do what little they can. Just holding hands and sitting with your wife during the long silent moments of despair comes to be incredibly important for how well your family comes through this crisis. I have been reminded many times over the years by Lauren, that she has strong images of the little ways we tried to comfort each other. Those small moments have added to the foundation of our marriage much more than a Caribbean cruise ever did. I believe that the very way mothers and fathers have to act to survive a premature birth makes adjustment and acceptance difficult. As you know full well, we must go through life taking things one at a time; otherwise, we would drown in our sea of problems. So its three months of bed rest, an emergency C-section, Apgar scores, intubation, mom gets discharged from the hospital, trips to the NICU, lost 20 grams yesterday, blood gasses, IV in the scalp now, extubation, the breast pump broke, gavage, room air, gained 10 grams, gained 40 grams, discharge planning, coming home, apnea monitors, --you all know the story. It is very natural for us to look at the pieces one at a time, but often we lose sight of the big picture of adjusting to and accepting our lives. Sometimes, I think of the big picture in terms of the question, "Why are we having babies, anyway?" Now, that's a tough question. The answers are sometimes unknown, and they differ for different people. But we often forget about that question as we deal with a high-risk birth one step at a time. There were many reasons Lauren and I decided to have a baby. As all of you know people who have their first child have no idea of what they are getting themselves into. But somewhat naively Lauren and I had the idea that a baby would bring more love to our family. I am going to address my remaining comments to those of you who have this same wonderful, naive idea.//// If having a loving family is the most important thing in your lives, then the family is more important than any one of its members. High-risk parents sacrifice themselves and their family for months and years to do the best they can for their baby. This is natural and essential. But at some point, I believe that we should re-evaluate our priorities as parents, and perhaps return our attention to ourselves, our families, and why we're having these babies anyway. We have learned by now that we can't have it all. Life without emergencies simply doesn't exist. What is most important to you? I'd like to give you a couple of examples of another way I approach thinking about this problem. The first comes from a newspaper article called, "Mother of quads offers some advice." It is an interview with a veteran mother of quadruplets giving advice to the mother and father of test-tube quintuplets who were born in Michigan a few years ago.
"Four of Gail Methven's seven children had the flu Tuesday, and the family's new puppy was chewing on her foot, but Methven still found time to offer a little advice to the parents of Michigan's quintuplets."
"First of all,"she said, "adhere to the pain cries only.....if you can't get used to all the crying, well, good luck. Schedules are a must when they're infants. Feeding, bathing, diapering, potty. We had it literally written out You can't keep it in your head. I can't imagine what it would be like with one more than what I got. The husband is a must. He most definitely has to chip in and help. I got that in capital letters.....Norm, he starts work at 6 in the morning and he's out at 2, and that was a real blessing. I looked forward to when he walked in the door."
"And then I had my own routine for feeding four babies at one time," she said, "I guess what I'd do with the fifth baby, well, I wouldn't have the coffee and the magazine in the one hand. One hand was for one bottle, the I used my ankles and thighs to prop the bottles for the others. I had the one hand free, but I guess they won't be able to do that with the five. I don't know how she'll burp, either."
Then the article concludes with almost an afterthought, "Another thing is to keep the marriage alive. If it is at all possible, they need to get away...to keep their sanity--and their marriage."
My second example comes from friends of mine. I dedicated my book to Joey, Rachel, the other unfortunate children, and their parents. Joey and Rachel were a brother and sister who never knew each other. They both died in the first year of their life from a rare genetic disorder--I think its called Verdig-Hoffman's. Their parents are my friends, Mark and Cathy. They didn't know anything was wrong until Joey was about 3 months old. After he died, Mark bravely told me that they would chance the odds again and have another baby (three out of every four of their babies should be normal); and if that didn't work out maybe even try again. Then Cathy got pregnant again, and had a miscarriage. And a year later Cathy gave birth to Rachel--who looked so different when she was born. But Rachel wasn't different. You all know of similar stories, parents concentrating on one step at a time--learning about respirators and monitors, in and out of hospitals, and grieving over lost dreams. You've done it. Well Cathy and Mark separated and divorced a long time ago. I asked Mark why he thought they split up. He said, "Mike, by the time Rachel died we hadn't talked about anything together or done anything together unless it involved Joey and Rachel. When they were gone so were our connections. We became two individuals pouring our energy into caring for our babies. We hadn't been a couple for a long time." It is tragic to me that many of us have babies to add love to our marriages, yet having high-risk babies often detracts from that love. With the best of intentions we focus on the best care for our babies--and forget about our families (and the reason we had a baby in the first place). I think that it is very difficult to step back and look at the big picture. We don't think to ask ourselves, "Why am I doing this?". But in the long run I believe that a premature birth needs to be put in the perspective of what a family wants out of their short time on this planet. There will be different answers for different people. I want to suggest to you that part of caring for preemie parents (and ourselves) may involve stepping back at some point and realizing that perhaps our baby should stop being the main focus of their lives. Do you want to spend your time overcoming all of the disadvantages and have your preemie graduate from college, or does that mean neglecting your spouse and your other children? When can you have your time in the sun again? Perhaps you might decide to reduce the speech therapy every Saturday to only twice a month, and then spend those two extra Saturdays on family picnics, trips to the movies, or just getting away with your spouse. I don't have your answers, I only hope that you ask yourselves the question. I encourage all of us to look at the big picture, and remind each other to think about why we are doing all of this anyway. Finally, I want to acknowledge that all of us experience a great amount of pain and suffering in our families, pain that can come and twist our hearts and stomachs when we least expect it. I wish to conclude by telling you my belief that at least parts of the pain are very good and necessary for us. For without the pain, we don't have love. When someone chooses to love someone else, we entrust the care of our very being to that person; and we pledge to care for that other person's well-being. To do this entails becoming vulnerable. When these two people choose to love and create a child, the vulnerability grows with the commitment of love. And pain and fear always comes, even if you only have full-term healthy babies. So I ask you to appreciate your pain; it is a huge symbol of your love. You may wish the pain go away, but that would leave you un-feeling and unloving. You have made commitments, and the fact that you have suffered so much with your love means that you have loved very well. As Anthony Padovano has said, UNRESTRAINED LOVE REQUIRES SUFFERING.
Finally, I would like to conclude by paraphrasing a few words from my favorite song. I believe it is relevant to what I've been saying.
/// "I say love, it is a flower; and all of you, it's only seed. When the nights have been too lonely, and the road much too long; when you think that love is only for the lucky and the strong. Just remember in this Winter, far beneath the bitter snow; lies your seed that with the sun's love, in the Spring, becomes the Rose."
Thank you.
Return to Preemie-l Conference Reviews, Papers || Return to Preemie-l Home Page