Guest Post: Sarah Grandfield-Connors
My daughter died from a lethal congenital defect. I work to help people see her humanity. I hope to encourage families to choose life.
I knew I was pregnant early on. My doctor confirmed this, sending me home with a bag of goodies for new moms. I was ecstatic. For six years I prayed for this baby. I went to my second appointment, at 9 weeks, with my teenaged step-daughter so she could see our baby during a scheduled ultrasound. I’d already had an ultrasound at 6 weeks. I was looking forward to having images of my baby’s first weeks of life. I didn’t know how important these photos would be. In the quiet exam room we waited for the tech to come and talked about what a baby would be like in our home. She and I had chosen a name, if the baby was a girl, Beatrix. My husband was amenable, so this name stuck. We had a perfect view of the ultrasound screen when we began, however I immediately knew something was wrong. My step-daughter was unaware of any irregularity, this being her first time seeing an ultrasound. I understood what the tech’s silence could mean. She seemed to be moving between my daughter and the screen, which was turned away from me. I asked if the baby’s heart was beating. It was, so I didn’t worry much after that. The only pregnancy complication I could imagine was miscarriage, and miscarried babies didn’t have beating hearts. After our ultrasound we returned to the waiting room. Before long my doctor called me into her office. She explained I was beginning to miscarry my baby. His/her heart was beating very rapidly and weakly. She believed I’d been infected with a virus. She took blood for testing and gave me instructions regarding what to do if I began spotting. I met my daughter in the waiting room and we walked out together. I didn’t miscarry. There was no virus.
At 12 weeks my husband and I went in for a nuchal fold translucency test. The doctor found a large amount of fluid in the baby’s nuchal fold. The tentative diagnosis was a genetic disorder, most likely Down’s syndrome. After the appointment we sat in our car contemplating life with a special needs child. We agreed we would carry this baby for as long as we could. At 16 weeks we had an early fetal anatomy scan. The thickened nuchal fold had grown and was joined by an omphalocele. With both problems and my age (35) the chances of a genetic defect were 90% which was likely not Down’s. This was the first time we heard the term “incompatible with life”. We had an amnio the same day. Our doctor explained that even if we didn’t terminate, it would help the baby in terms of treatment after birth. Afterwards we spoke to a genetic counselor. She was horrible. She referred to our baby as “the products of conception”, rather than a human being. Our baby was diagnosed with Trisomy 13 based on ultrasound images. The rapid results of the amnio told us our child had no genetic defects and our baby was a girl. My hope blossomed.
Beatrix astounded doctors who’d insisted I would miscarry early, yet they continued pushing termination. Even with her grim prognosis we should have been allowed to enjoy her while she was living.
Eventually I searched for, and found, a specialist who would help us without judgement. Because he detected new problems he felt our local hospital would not be equipped to care for Beatrix. He suggested a large children’s hospital an hour away. He and doctors there would co-manage our care. The hospital would do an evaluation at about 26 weeks (including MRI), but other than this appointment my specialist would see me until 34 weeks, when the hospital would take over managing my pregnancy. At the evaluation our world turned upside down. The list of things “wrong” with our baby grew significantly. In addition to multiple newly discovered defects, the MRI showed she had virtually no umbilical cord, which meant she could get stuck in the birth canal and I could hemorrhage. I knew what it was before they gave us the diagnosis. I had discovered this disorder when researching her defects. Limb Body Wall Complex. We continued with care. We wanted our baby to live and would not give up hope she could be an exception to the statistics. We provided them with medical journal articles featuring anecdotal stories of survivors. One doctor laughed while patting my knee, saying “you are a tenacious one, aren’t you?” Beatrix’s LBWC was most evident in the lower portion of her body. Her brain, heart and circulatory system were perfect. Her arms moved, and we could see her perfect face in ultrasounds. We’d even seen her smile. Because her anomalies were low, and we’d seen evidence of her practice breathing, we believed she could possibly breath at birth. LBWC is lethal, in most cases, because of poor lung development. We found a perinatologist who was willing to work with us. She told us, “I like to see what the baby has to say when they are born.” This was exactly what we needed. Someone who wouldn’t give up on our daughter based on her diagnosis, but would not cause suffering if survival was unlikely. We prepared ourselves for a NICU stay for Beatrix, while concurrently preparing for her death. At 34 weeks I went into labor. When Beatrix was born she was given breathing assistance, but after 20 minutes the doctors came to tell us she wasn’t going to make it. I was being stitched up so my husband went to be with her. She wrapped her tiny hand around his finger. She smiled. He brought her to me and she died peacefully in my arms. She never opened her eyes, just laying still with us before she continued on her journey home. Doctors had prepared us for a monster. When we finally saw her, we saw perfection. She had beautiful rosebud lips and the longest eyelashes. Her tiny hands and feet were perfectly formed. She had long slender legs. When I opened her swaddling to look at her deformities, all I saw was my beautiful baby. I thought I’d be frightened. But how could anyone be frightened of such a sweet baby? I thought I wouldn’t be able to let her go. But I was the one to ask them to come for her when the time was right. I thought this would break me in two, and I wouldn’t be the same person. It has. I’m not. Most babies with LBWC are aborted. This is terrible —
There is no question in my mind of the benefits of continuing this type of pregnancy. Giving my daughter every chance for life and a peaceful death was the only gift I would ever give her. Giving myself tools to heal and hold onto her memory was a gift I could give to myself. I think I have loved Beatrix since the day I was born. My arms were made to hold her until she breathed her last. I wonder if she knew I was the one who had carried her, safe in her quiet place? I’d like to think she did, that when I kissed her and whispered in her ear, “I love you”, she recognized my voice and knew love.
I thank God I didn’t miscarry like they anticipated I would. I cannot contemplate not knowing her in this world. I’m so grateful I was able to hold her, even if only for a short time. There’s much I treasure from the morning she was born. The world disappeared. A feeling of absolute peace permeated everything around us. I remember exactly what my daughter smelled like and the weight of her in my arms. I remember the looks which passed between my husband and I, alone with our daughter, each saying goodbye our own way. How deep and quiet was the love I felt for this baby. I was frightened before she came. Now I realize it wasn’t her who I’d been afraid of: it was love. I was afraid to love her and have to give her up. I know now in allowing her to grow and live, even if only in my womb, I received a gift. This gift holds me over when I’m feeling sad or missing her. The love I was afraid of overflows in me and touches everything I do. I entitled this “She Brings Joy” for a reason. Beatrix means (in Latin) “she brings joy”. People could ask how I found joy when my baby was dying? Those moments parenting her the way she needed to be parented were a time of complete joy. It was part of God’s plan to find this joy in the midst of sorrow. I could never explain to anyone who hasn’t experienced the same situation how simple it is to find joy in my Beatrix. My fears were overcome when my heart met hers, the first time I held her. How could I not find joy loving my baby girl? Other people see me and think of sadness. I end with this affirmation: Of the varied emotions I felt carrying Beatrix knowing she would most likely die, the greatest was the joy I felt carrying her for as long as I did.
I felt the same joy holding her tiny hand, and looking at her face for the first time. Every day when I recall holding her, I’ll remember that joy. With every passing year, I’ll sink further into the joy.
Meet the Author:
Sarah Grandfield-Connors is a wife, mother of 4, step-mother of 2, and pro-life blogger for Save The 1. She’s also the founder of limbbodywallcomplex.net, a pro-life, diagnosis specific website which supports parents who continue their pregnancy after receiving the same lethal diagnosis which took her daughter, Beatrix Elizabeth. She blogs on grief, loss, and pro-life issues pertaining to continuing a pregnancy after a lethal anomaly has been diagnosed, at www.shebringsjoy.com.