by Grattan Brown, STD, and Susan Bane, MD
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Here are the stories of two moms, each carrying one healthy twin and one twin with a life-limiting condition. Both women were devastated with their diagnoses, but each woman had very different feelings about interacting with her child with disabilities if they survived labor and birth. One planned to distance herself and avoid the painful heartbreak that her child’s death would bring. The other planned to do everything possible to meet her child alive, even if it put herself at risk; her doctors had to temper her feelings.
With Dr. Bane’s help, each woman was able to work through her complex feelings about interacting with her newborn child with disabilities. Both women could have found doctors willing to terminate their pregnancies and end the lives of all four children. Either of them could have had a procedure that would have led to the death of the child with disabilities but not the healthy one. Neither of these women needed or wanted to end her children’s lives prematurely, and if they had, neither would have experienced growth from a loving encounter with her dying, disabled newborn.
Here is Dr. Bane’s story in her own words:
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Give Him to Me NOW!
The day came for her ultrasound, and like many other mothers, she couldn’t wait to find out what she was having. Not one, but two boys! Her joy quickly turned to fear, though, when she learned that one of her boys had a fatal condition and would not live long after birth.
In the doctor visits to come, we talked about how this woman wanted to handle the delivery. She shared her thoughts with us, and we told her ours. She did not want to hold her sick baby after he was born. She just knew it would be too hard to say hello and then have to say good-bye. I told her that I had seen women in similar situations make that decision and live to regret it. The guilt had torn them apart; they lost their chance to say goodbye. The window of opportunity was gone and they could not get it back.
I also shared with her what I witnessed when women did decide to spend time with their dying children. Not one told me she regretted her decision. Those minutes and hours together were the most precious gift God could give those families. The love in those rooms was palpable. It was hello and goodbye, but it was comfort and closure as well. It helped with the grieving process. In the end, she was adamant. She thought it would be too hard to hold or see the baby who would not survive, even for a short period of time. We respected her opinion, and her birth plan included this decision.
Labor came, and I was on call. The mood in the delivery room was quiet. Her little boy who was sick would deliver first. The nurses, NICU team, scrub tech, and doctors involved all knew the plan. There would be no laughter and tears of joy as I handed him to his mom shouting, “It is a boy!” – I would simply deliver him and take him to his bassinet.
My patient labored very hard and delivered a beautiful baby boy who appeared perfectly healthy. He was placed in the bassinet, evaluated, and wrapped in a warm blanket. The room was still. His mom did not look his way, as she had planned. Contractions continued, and it was time to deliver her second son, her son who would live. The one she would raise. The one with whom she would witness a first smile, hear his first word, and watch his first step. The one who would celebrate birthdays, graduations, and maybe a wedding. The one she would have time to nurture and love.
She began pushing, and the labor and delivery room was still eerily quiet. As she continued to push, her son who was lying by himself in the bassinet, the one she was trying to avoid because of the fear in her heart, started to make noises. She looked at me between pushes, and in a soft but concerned voice said, “Does he have the hiccups?” I quietly responded, “No, he is having a hard time breathing.” Her demeanor immediately changed. Her fear left her. Her posture became powerful, and her voice changed to a clear, strong tone that still resonates with me today. She learned forward, looked me directly in the eyes, and with a demanding expression said, “Give him to me!”
A nurse brought him to her, and she labored while holding her dying son in her arms. It was one of the most beautiful pictures of selflessness I have ever witnessed. Her fear of saying goodbye was stripped away by God’s gift of nurturing her dying son. She did not hesitate to comfort him when she knew he needed his mom. That baby spent his precious little time on this earth in the warmth of his mother’s arms, instead of lying alone in a bassinet. Her selflessness was not only a gift to him, but also to everyone in that delivery room.
Toby and Grace
Jennifer had twins, too — a boy and a girl named Toby and Grace. Today Toby is a busy teenage boy, and Grace is in heaven. During Jennifer’s pregnancy, Grace was diagnosed with anencephaly, a fatal condition that deforms a baby’s brain and skull. Most women actually have miscarriages with these babies, so to deliver a baby with anencephaly is quite uncommon.
Jennifer is one of the strongest, most stubborn women I have ever met. I smile as I write this because that is why I admire her so much. Jennifer knew she would not have long on this earth with her little girl and wanted any amount of time God would give her. Her healthy son, Toby, was probably going to be born first because he was positioned lower in her womb. This made it possible to attempt a vaginal delivery instead of having to plan a cesarean section.
Jennifer’s greatest hope was that Grace would not die during her pregnancy or labor. She wanted time, no matter how little. She wanted to tell Grace about her family and let her know she would always be a member. To make a live birth more likely, Jennifer requested a cesarean section if Grace did not tolerate labor. To any doctor, this plan is crazy. At first, I thought it was nuts. I did not want to elevate her risk with surgery just so she could “have time” with her daughter. Grace was going to die soon after birth. If she died naturally during delivery, it would be safer for Jennifer. I had to think of her well-being in addition to that of the twins.
My partners and I discussed the situation at length. Jennifer was healthy, probably able to deliver twins without a cesarean section, but also likely to recover well from a cesarean if necessary. So, we agreed to perform one if Grace were not tolerating labor, just as we would do for a baby without a life-limiting condition. Jennifer agreed with this plan. The time came for her to deliver, and I was on call. We moved Jennifer from the birthing room to a delivery room in case we needed to perform a cesarean section. Both babies were tolerating her pushing, and Toby was born first. The room was filled with excitement. What a handsome little guy.
Now we needed to deliver Grace, and we needed it to happen fast. I was not sure how she would tolerate labor, but I thought she would probably come quickly. Her brother had already been through the birth canal and had dilated Jennifer’s cervix enough for Grace to fit through. Sure enough, Grace came very soon after, and she was alive. As she delivered, I saw that our ultrasound diagnosis of anencephaly was correct, and I placed a little hat on her head and handed her to Jennifer.
The room immediately quieted. Our excitement at the birth of Toby slipped away as the reality of Grace’s situation became the focus. I suddenly felt very uncomfortable. I was not supposed to be there anymore. This was a moment for Jennifer and her husband to share alone. I asked everyone to step out. We left the family together. No doctors fixing stuff, and no nurses rubbing Jennifer’s uterus – just a mom, dad, and their children getting to know each other.
Grace lived for several hours, but her impact on our lives continued. I did not know it at first, but Jennifer’s vision for her disabled child and our ability to make it happen also had a profound effect on the nurse anesthetist in the room that day. A few days after the delivery, I received a beautiful plant from her and a card that read “You have a gift.” She too had witnessed the value of life, no matter how physically different Grace appeared from all those who met her that day.
Toby, Grace, and Dr. Bane in 2002
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