She Brings Joy

by Sarah Grandfield-Connors

I have had a difficult time writing something out for this project, as I am going through a low time. Even after four years, there are low times, when the sadness leaks out of you and touches everything around you.

I wanted to begin with an introduction and a background to my daughter's story. I hope to write here again, and would love to know that when I do- anyone reading will see the human being that my baby was, instead of the still images of a photograph.

When my Beatrix died, I shared her story with every organization that I could- what I will share here will be similar to what I wrote then, with some changes as appropriate, as an introduction for you, and a reminder for me. That even with the low times that followed, there was beauty in that storm.

There are so many important things that I would like to share about our story. The journey we went through to have our baby is just as important as what happened after she was born. I sometimes forget about that, the life that she lived before she lived her life.

I knew I was pregnant almost immediately. I only took a test to confirm it. I saw my doctor who pronounced me a mom-to-be, and sent me home with a gift bag full of goodies for new moms. I was ecstatic. This was a long awaited for baby- for six years I had prayed, begged, and hoped. And here she was. When it was time for my second appointment I brought my 16 year old step-daughter. I was hoping she would get to see her new baby sibling on an ultrasound screen. I knew that I would be getting an ultrasound; because I was spotting slightly and the doctor had mentioned casually that we would be taking a look to make sure everything was ok. I was excited because I had already had one ultrasound at 6 weeks. I was looking forward to having photos to show my baby of his/her very first weeks in my womb. Generally, there aren't that many images done this early in pregnancy. I didn't know then that these photos would be so very special to me, but for a different reason.



In the quiet ultrasound room, as we waited for the tech to come in, my daughter and I talked about the baby. What a baby would be like in our house, all of our children were older ages 18, 17, 16, and 6. My husband and I have a “yours, mine, and ours” household. Everyone got along really well; a baby would be such a welcome addition to our little family! From the day I realized I was pregnant I knew that this baby would be a girl. I did not have a biological daughter, and my step-daughter was old enough now that she would be like a little mother for this baby (she thought the baby was a girl too). We had already chosen a name; it was she and I who wanted to call her Beatrix.



The ultrasound started with my daughter having a perfect view of the screen. I knew immediately that something was wrong. The tech was much too quiet, and after the first few seconds she almost seemed to be trying to sit between my daughter and the screen, which was also turned completely away from me. I asked if the baby's heart was beating, it was, and I didn't worry too much after that. I was healthy and strong. My husband was healthy and strong.



After a short time back in the waiting room, the doctor called me into her office (alone), and explained that I was most likely going to miscarry very soon. The baby seemed to be enclosed almost in a sac of fluid- all of his/her visible organs were swollen with fluid. His/her heart was beating very rapidly but very weakly. It was only a matter of time. This was a very sick baby, and this was only at 9 weeks. The doctor thought that I had been infected with some type of virus, Rubella maybe. She took a lot of blood and told me that she would call with the results. She gave me instructions regarding what to do when I began to miscarry. I met my daughter in the waiting room and we walked out together. This was the beginning of an almost endless number of ultrasounds and doctors appointments. There was no virus.

At 12 weeks, the swelling was completely gone, but there was a large amount of fluid in the baby's nuchal fold. The technician also thought that something may be wrong with the baby's legs, but the doctor didn't agree with that. The diagnosis was a genetic disorder, most likely Down Syndrome. After that appointment, my husband and I sat in the car and contemplated life with a child with Down syndrome. We agreed that no matter what, we would carry this baby for as long as she would stay. No matter what.



At 16 weeks we went for an early fetal anatomy scan. The thickened nuchal fold had turned into a cystic hygroma. It was also joined by a large omphalocele (abdominal wall defect located at the base of the umbilical cord) containing the baby's liver and intestines. With both problems together and my age (35 at the time), the chances for a genetic defect was almost 90% and the genetic defect would most likely not be Down syndrome. This was the first time we heard the term "incompatible with life.” We had an appointment for an amnio that day, our doctor had made it clear that even if we weren't going to terminate, it would help the baby in terms of treatment after birth if we knew exactly what was wrong with him/her. After the amnio we spoke to a genetic counselor. It was horrible, she referred to my baby, the baby we had just watched moving on an ultrasound screen, as "the products of conception.” Not once did she refer to her as a human being. The baby was diagnosed Trisomy 13 based on the results of the ultrasound. We were told that the baby would almost likely be miscarried, and if we did manage to carry to term, he/she would go straight from the hospital to an institution.



When we got the results of the amnio there were no genetic defects. And I was going to have my baby girl- Beatrix. I began to have hope. Beatrix kept growing, astounding the doctors who had insisted that she would miscarry. Every appointment became an emotional struggle for us. The doctors allowed us no joy, no hope in watching the magic of our daughter moving in the womb. Even though her prognosis was so poor we would have appreciated being allowed to enjoy her while she was living.



At 20 weeks, we were transferred to a specialist. He would be seeing to my care until I delivered, if I delivered. He was fantastic! Unfortunately for us, he also detected new fetal anomalies. In addition to her omphalocele and cystic hygroma, he detected dolicocephaly (an abnormally shaped head), and a foot deformity. The new deformities were likely a result of the position of her body, not her syndrome (as yet unknown), which was why they hadn't been seen before. He told me that our local hospital would not be equipped to care for Beatrix, should she make it to term. He suggested Morgan Stanley Children's Hospital (part of Columbia Presbyterian Hospital- the #1 hospital for birth defects in NY State) in NYC. He and the doctors there would co-manage my care as the hospital was over an hour away from my home. The hospital would do an evaluation at about 26 weeks (ultrasound and MRI), but other than that he would be seeing me almost to the end. At 34 weeks my care would be transferred totally to the hospital.



At that 26 week ultrasound our world turned upside down. The list of things "wrong" with our baby grew significantly. Almost every part of her lower body was malformed. In addition to all of the things the other doctors had found, the MRI showed a sacral agenesis (a spinal deformity which causes paralysis), kyphoscoliosis, bilateral clubfeet, and lungs that had herniated into her abdomen. She also had virtually no umbilical cord, which meant absolutely no vaginal delivery- she could get stuck in the birth canal. I knew before they gave us the diagnosis what it was. I had read about this awful thing, Limb Body Wall Complex. It was confirmed, and we were sent home to plan a funeral.



I continued with care. We asked them to at least try, we knew it was lethal, but try. They were willing. Her lethal diagnosis came from the physical aspects of her disorder. The size of the omphalocele leaves no room for the baby’s lungs to grow. Her brain, heart, and circulatory system were perfectly normal. We could see her perfect face in the ultrasounds; we saw her smile in a 3D one. We wanted them to save our baby. We could not give up hope that she was going to be the exception to the rule.

At 34 weeks, on the evening of December 12, 2010 I went into labor. Beatrix was born via classical c-section at 2:03 a.m. on December 13, 2010. She was not breathing when she was born. She was resuscitated and placed on a ventilator. She still could not breathe. After 20 minutes the doctors came to tell us that she was not going to make it. I was still being stitched up so my husband went to be with her. She wrapped her tiny hand around one of his fingers. He brought her to me, and she died peacefully in my arms at around 3:50 a.m. She never cried. She never opened her eyes. She just lay sweet and still in my arms before she continued on to her journey home.



The doctors had prepared me for a monster. I could not visualize all of her deformities in my mind during the pregnancy. When I finally got to see her, all I saw was a perfect little baby. My baby Bea. She had the most beautiful little rosebud lips and the longest eyelashes. Her tiny hands and feet were perfectly formed. She had long slender legs and a tiny hiney like my other babies had. I opened the swaddling blankets to look at her body. To see how awful it really was. I was gratified to see that it was almost the same as any other baby. Her body was not monstrous and deformed. It looked like a baby's body with two differences. Obviously, she had an omphalocele, and her legs were positioned slightly to the left of her spine, instead of straight up and down. But even with those outward issues, she looked like a normal baby girl. I thought I would be so frightened. How could anyone be frightened of such a sweet little baby girl? I thought I wouldn't be able to let her go. But I was the one to ask them to come and get her when the time was right. I thought that this would break me in two, and I wouldn't be the same person- it has, and I'm not. There are not many Limb Body Wall Complex babies born. Most of them are miscarried or aborted.

This is a terrible thing to me, I know that studies show that women who terminate their pregnancies with a poor prognosis do not do as well as women who continue their pregnancies. I know that if I had to do it all again, knowing what I know now, I would have loved Beatrix since the day I was born, it seems like. I was made for loving my beautiful baby girl. My arms were made to hold her until she breathed her last breath. My lips to cover her face with kisses. I wonder if she knew I was the one who had carried her all that time, safe in her quiet place? I would like to think she did, that when I kissed her and whispered in her ear, so many times, that I loved her, she recognized my voice, and felt loved. There is nothing I could ever regret in choosing to carry her. In fact, I thank God that I didn't miscarry like they said I would. I cannot contemplate not knowing her here in this world any more than I can contemplate not knowing any of my other children. I am so grateful that I was able to hold her, even if only for a short time.



There are so many things that I treasure from that early morning when she was born. I treasure the way that the world seemed to disappear, there was no one but the three of us. I treasure the feeling of absolute peace that permeated everything around us. I treasure my memory of the morning, I can't tell you what the nurses looked like, and the physical pain of the surgery has faded away, but I remember exactly what she smelled like and what the weight of her in my arms was like. I remember the looks that passed between my husband and I, each of us saying goodbye in our own ways. How deep and quiet was the love I felt for this tiny little baby. I was so frightened before she came, but now I realized that it wasn't her that I had been afraid of, but love. I was afraid to love her. To love her and have to give her up. I know now that in allowing her to grow and live, even if it was only inside of my womb, she gave me such a gift, and it will hold me over when I'm feeling sad or missing her. All that love I was afraid of feeling has overflowed in me and touches everything I do.



I entitled this story "She Brings Joy" for a reason. As I said in the beginning, my step-daughter and I had chosen the name Beatrix for her. What I did not mention was that we had actually chosen that name for a future baby girl before Beatrix was even conceived. It was #1 on our "list of names we would call a new baby if we ever had one.” Beatrix (the name) has been almost like a prayer at times, and like a taunt at others. Beatrix literally means (in Latin) "she brings joy.” It would seem odd to anyone who didn't understand how much I love this sweet baby girl, people could ask how this situation brought me joy? During my pregnancy, I wondered, as most bereaved people do, what I had done to deserve this? How could I feel joyous when I felt too sad? It must have been part of God’s plan that I would find joy in the midst of my sorrow.

I could never explain to anyone who hasn't gone through the same situation how easy it is to find joy in what Beatrix brought to me. Her middle name, Elizabeth, means "my oath to God.” How easily I have kept that oath, that I find joy in Beatrix's life. Every last second, every movement, every heartbeat, the way my heart leapt for joy the first time I held her. How could I not find joy in loving my little baby girl?

Other people may see me and think of sorrow. I can end this with this affirmation: Of all of the varied emotions I feel at having carried Beatrix to term knowing she had a lethal anomaly, the greatest has been the joy I feel at having carried her for as long as I did. She did bring me joy. And every day when I remember the way she felt when I held her, I will remember that joy. With every passing year, I will remember that joy. And in the end, when I am ending my time here on this earth, I will leave with joy, knowing that I am going home, where she is waiting for me.

 

In 2010 my unborn daughter was diagnosed with the life limiting condition Limb Body Wall Complex aka Body Stalk Anomaly. We chose to continue our pregnancy and delivered her at 34 weeks GA. She survived for a beautiful 1 hour and 47 minutes. Since then my "mission" has been to find families facing this diagnosis, and who have decided to carry their pregnancies to term, and to share their stories in hopes of encouraging others to continue their pregnancies after a lethal diagnosis.