Back To The Beginning Again

Wednesday, December 30, 2015

I recently decided to begin submitting Beatrix's story to writing venues which accept unsolicited offers. In order to prepare my submissions, I decided to write out our story anew- and surprisingly, I have had a difficult time writing this post. Even after five years there are low times, when the sadness leaks out and touches everything around me.

When my Beatrix died, I shared her story with every organization that I could. I share her now, as an introduction for you and a reminder for me. A reminder of how even with the low times that followed there was beauty in the storm.

I would love to know that anyone reading will see the human being my baby was, instead of just still images of a dead child or a political argument about abortion exceptions. There are so many important things 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 this- 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. 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 I would be getting an ultrasound because I was spotting slightly. The doctor had mentioned casually that we would be taking a look to make sure everything was ok.

This was exciting because I had already had an 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- 18, 17, 16, & 6. My husband and I have a “yours, mine, and ours” household. Everyone got along well- a baby would be such a welcome addition to our 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 something was wrong. My step-daughter was unaware of the friction, this being her first time seeing a pregnancy ultrasound. But I understood what it meant when the tech is too quiet and 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. The only negative pregnancy issue I could imagine was miscarriage, and miscarried babies didn't have beating hearts.

After our ultrasound we returned to the waiting room, and after a short time the doctor called me into her office (alone). She explained that I was most likely going to miscarry very soon. The baby's skin was ballooned around her little body, the space between upper and lower layers of skin seemingly filled with fluid -- all of his/her visible organs were also 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 I had been infected with some type of virus, Rubella maybe. She took numerous vials of blood and told me 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.

I didn't miscarry. And this was the beginning of an almost endless number of ultrasounds and Drs. appointments. There was no virus, or any other measurable issue which explained my baby's problems.

At 12 weeks we went in for our much all fold translucency test. The swelling was completely gone, but there was a large amount of fluid in the baby's nuchal fold. The ultrasound technician also thought something may be wrong with the baby's legs, but the doctor didn't agree. The tentative 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 (I have since learned that cystic hygroma is not an actual medical term, but a common name for a cystic lymphangioma -- a pocket of fluid underneath a person's skin. Usually the result of trauma).

 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 our baby as a human being. The baby was diagnosed Trisomy 13 based on the results of the ultrasound. We were told our child 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 rapid results of the amnio three days later, there were no genetic defects.

I also learned I was going to have my baby girl -- my sweet Beatrix.

I began to have hope.

Beatrix kept growing -- astounding the doctors who had insisted she would die before she was ever born. Every appointment was an emotional trial 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 grim we could have been supported in our choice. 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 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 appointment, my specialist 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 which 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 and I would hemorrhage. I knew before they gave us the diagnosis what it was. I had read about this awful thing when I researched her defects -- Limb Body Wall Complex. My worst fears were confirmed and we were sent home to plan a funeral.

I continued with care. We asked them to try. We knew it was lethal, but try. We provided them with medical journal articles featuring anecdotal stories of survivors. One doctor laughed, patted my knee, and said "you are a tenacious one, aren't you." He was the same physician who brought medical students into my ultrasound exam room without asking permission, and who told me to stop talking during his presentation to them.

But, even though some of them were disdainful of our decision, a few of the physicians at Morgan Stanley were willing to try.

Beatrix's case of LBWC was most evident in the lower portion of her body. Her brain, heart and circulatory system were perfectly normal. Her arms moved, and we could see her perfect face in the ultrasounds. We saw her smile in one 3D ultrasound. The lethality of LBWC is most often due to the size of the omphalocele. It leaves no room for lung development, and baby can't breathe at birth. Because my daughter's anomalies were so low, and we had seen evidence of her practice breathing, we had hopes of her being capable of breathing at birth.

We wanted them to save our baby. We could not give up hope she would be the exception to the rule.

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 were looking for. Someone who would not give us false expectations -- but who would it give up on our daughter because of her diagnosis.

We prepared ourselves for all of the attendant issues involved with a prolonged hospital NICU stay, and concurrently we prepared ourselves for the death of our unborn child.

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 given assistance. She still could not breathe. After 20 minutes the doctors came to tell us 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 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. I wanted to see how awful it really was. I was gratified to see 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 my 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 aborted.

This is a terrible thing to me --

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. There is no question in my mind of the benefit of continuing our pregnancy. Giving my daughter every chance for life and a peaceful death was the one gift I could give to her. Giving myself the tools to heal and hold onto her memory was the one gift I could give to myself.

The time I had with our daughter was vital in terms of parenting.

I have loved Beatrix since the day I was born, it seems. I was made for loving my beautiful baby girl. My arms were made to hold her until she breathed her last. 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, "I love you", she recognized my voice and felt loved.

There is nothing I could ever regret in choosing to carry her. In fact, I thank God 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 I was able to hold her -- even if only for a short time.

There are so many things I treasure from the early morning when she was born. I treasure the way the world seemed to disappear -- there was no one but the three of us. I treasure the feeling of absolute peace which 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 my daughter smelled like and how dense the weight of her in my arms was. I remember the looks which 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. Now I realized it wasn't her who 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 in allowing her to grow and live -- even if it was only inside of my womb, she gave me such a gift. This gift will hold me over when I'm feeling sad or missing her. All the 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 this 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 an odd choice 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 even I wondered, as most bereaved people do, what I had done to deserve this. How could I ever find joy when I was sometimes so sad?

How would I find joy when my baby was dying?

But I did. Those tiny moments with her, parenting her the way she needed to be patented, were a time of complete joy. It must have been part of God’s plan for me to find this type of joy in the midst of my sorrow.

I could never explain to anyone who hasn't gone through the same situation how simple 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 this oath, that I find joy in Beatrix's life. Every last second, every movement, every heartbeat; the way my heart leapt with happy anticipation 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 an 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. The joy I felt when holding her tiny hand in mine. Looking at her small, sweet face for the first time.

She brought me so much joy.

Every day when I recall the way she felt when I held her, I will remember that joy.

With every passing year, I will sink further into the joy.

And in the end, when I am finishing my time here on this earth I will leave with joy, knowing I am going home where she is waiting for me.

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