Showing posts with label Limb Body Wall Complex. Show all posts
Showing posts with label Limb Body Wall Complex. Show all posts
Friday, May 27, 2016

She Brings Joy

In 2010 we chose not to have an abortion, after learning our unborn child had a fatal fetal anomaly called Limb Body Wall Complex: Here is our story.


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 knew I was pregnant almost immediately. We 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. We were ecstatic.
I brought my 16 year old step-daughter with me to the doctor for my second appointment. 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, 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. 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 really well -- a baby would be such a welcome addition to our little family! From the day I realized I was pregnant I knew 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 immediately knew 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 I had been infected with some type of virus (most likely Rubella). She took a lot 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.



This was the beginning of an almost endless number of ultrasounds and Drs. appointments. There was no miscarriage. 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 something may be wrong with the baby's legs, but the doctor didn't agree.... 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 -- 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". The baby was diagnosed with Trisomy 13 based on the results of the ultrasound. We were told 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.
Three days later, we got the results of the amnio- 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 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. He told me that our local hospital would not be equipped to care for Beatrix, should she make it to term. He suggested a world renowned Children's Hospital in our state.
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 our 26 week ultrasound our world turned upside down. The list of things "wrong" with our baby grew significantly. Almost every part of her poor little 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. This went from being a "fetal anomaly" issue to a "health of the mother" issue rather quickly.  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 considered generally lethal, but we wanted to try. I found medical journal articles on survivors, and were laughed at (one doctor had the temerity to say, "you are a tenacious one, aren't you?" We asked for prenatal care which would give her a better chance of making it to term, such as a medical directive for bed rest. We were denied. We asked for prenatal treatments which may increase her chances for survival, such as steroid shots (for lung development) if I went into labor early, we were denied.
We finally found a neonatologist who was willing to treat our daughter, should Beatrix be treatable. Because her lethal diagnosis came from the physical aspects of her disorder, we asked for her to be assessed based on what actually presented itself at birth. With LBWC, the size of the omphalocele is the primary reason it is lethal. It 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 min. 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 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. The longest eyelashes. Her tiny hands and feet were perfectly formed. She had long slender legs and a tiny hiney like my other baby's had. I opened the swaddling blankets to look at her body. 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 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 carried to term. Most of them are aborted, because this disorder also carries the small possibility of harm to the mother if the baby has a short umbilical cord, which these babies often do.
I 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. 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 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 that 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, but I remember exactly what my daughter smelled like and how the weight of her in my arms felt. 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- but now I realized it wasn't her 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 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 the 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 ironic 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 to 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 this oath, that I find joy in Beatrix's life. Every last second was joy: every movement, every heartbeat, the way my heart leapt 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 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. 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.


BIO:  Sarah St. Onge is a wife, mother of 4, step-mother of 2,  pro-life blogger for Save The 1.  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.
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Tuesday, January 26, 2016

Exceptions for Fetal Anomalies Encourages Doctors' Coercion to Abort, by Sarah St. Onge

In 2010, I continued a pregnancy after my unborn child was diagnosed with a "lethal birth defect." During my pregnancy with Beatrix, {full story told here} I was repeatedly pressured by medical professionals to "terminate."

 Because of the lack of support during my pregnancy, I have dedicated the last five years to supporting families faced with the same diagnosis we were given for our daughter. In addition, I joined support groups for women who choose to continue a pregnancy after a poor diagnosis, hoping to encourage women on their journey.  During this time, I have heard the stories of dozens of families who were pressured to "terminate" pregnancies after being given a poor pregnancy diagnosis. Whether the issue was with the child or with the woman carrying the child, these parents' refusal to consider late-term abortion was often met with derision on the part of health care providers.
A few months ago, I was introduced to a family who was expecting a sweet baby with Limb Body Wall Complex -- the same diagnosis of my daughter Beatrix. Their story of how they were treated by medical professionals is perhaps the worst I have ever heard.

Not only were they pressured to abort their baby, but when they refused, their doctor began a course of minimal care in an obvious effort to punish them for wasting his time.

He refused to spend more than five minutes with them at visits; he explained the medical challenges in a way that was incomprehensible for a layperson, thereby not providing them the information they needed to make a true medically informed decision; and, he was condescending toward them as if they were only making the decision to continue the pregnancy because they weren't smart enough to understand the gravity of the situation.  They understood the gravity.  They knew this was a lethal diagnosis, but just didn't want to be responsible for ending their baby's life.  

 As if that treatment wasn't bad enough, he even refused to allow them to look at their baby on the ultrasound screen.  They requested to see their baby, and the physician outright refused.  The parents went to a mall which offered ultrasound services, paying out of pocket, just so they could have a glimpse of the baby they loved.  This may have been the only living picture they would have of their child, and they needed this memory of their child alive -- something others take for granted.

While this physicians was looking at their precious baby's face, he horrified them when he used the offensive term “not like a baby.”
Imagine this for a moment -- you’ve learned your baby will not live for long, if at all, outside of the womb.  Your only opportunity to see your child moving and alive may be in your doctor’s office on an ultrasound screen, yet your doctor turns the screen away telling you your child “isn’t like a baby”, -- refusing to allow you a glimpse of that tiny person in your body.

This was all after they had confirmed their decision to continue the pregnancy, and after they had already named their baby.
This physician’s personal bias didn’t stop at trying to manipulate a family into ending their baby's life, but included attempts to persuade them to travel out of state to procure the abortion, because they had already passed the legal gestational age of 24 weeks for late-term abortion in their own state.

Those of us who try to encourage women to continue their pregnancies hear these types of stories often.  It is tragically common for doctors to present "therapeutic abortion" as the normal course of "care" for a pregnancy in which an adverse diagnosis has been made.  Many doctors do not even broach the subject of continuing the pregnancy, simply asking pregnant mothers, “when should we schedule your termination?” after a diagnosis.  Most medical professionals assume that every woman wants to -- or should want to -- end a pregnancy where a child has been diagnosed with a lethal birth defect. In fact, when researching different lethal congenital disorders, you will often find "termination" listed as the “treatment” for the disorder!  This is not a woman-centered or parent-driven attitude, but a physician-driven attitude. 

 In terms of parents' decision-making, the carry to term path has flourished with organizations which support the parent(s) continuing their pregnancy.  The good news is that many hospitals have now created perinatal hospice programs for those using their facilities to deliver their babies.  In terms of women's health -- carry to birth has consistently and unequivocally proven to be a healthier medical treatment for women.




Yet individual physicians seem unable to shake the opinion that prematurely ending the baby's life is best.  They often deny patients access to pre-natal treatment due to the concept of "medical futility." These narrow-minded physicians decline to answer questions in layman's terms so that parents understand they have a right to continue the pregnancy.  They manipulate parents by telling them that birth will be incredibly traumatic for their child, often giving them horror stories about babies being ripped to pieces in the labor process.  This particular tactic has been shared in many parents' recollections of speaking to doctors after deciding to continue a pregnancy. Angie Smith's groundbreaking book about continuing a pregnancy after a poor diagnosis, "I Will Carry You" mentions this phenomenon.
As a side note --  many parents who "terminated" a pregnancy after a poor diagnosis are often offended by carry to birth families, feeling that our stories somehow imply that they made their decision due to ignorance or medical pressure.  But they generally aren't witnesses to the after-affects of those manipulated into "terminations" -- stories which are often shared in post-loss, pro-life leaning on-line groups.  These parents also discount the experiences of those of us who did choose to carry to term and who were relentlessly pushed to terminate over our strident refusals. 


 Studies have shown that when facing a poor pregnancy diagnosis, parents report being unsupported and rushed by their physicians.  Studies have further shown the decision to terminate will often culminate in an abortion within three days of a diagnosis -- clearly not sufficient time to research all of the options.  Lastly, studies show parents who continue their pregnancy after a poor diagnosis have better mental health outcomes than those who terminate, and some may be surprised to learn that the earlier gestation of the baby, the greater the negative feelings.  So those early detection tests are actually harming women's mental health.
When you allow exceptions for fetal abnormalities, or even for a fatal fetal diagnosis, you are giving your "blessing" to these women to end the lives of their children, and your position directly affects every single child diagnosed in the womb -- including the one whose parents choose not to have an abortion.  You give doctors permission to badger patients into abortion.  You are telling the medical community that these babies are acceptable targets for killing. 

Margaret Sanger, in an interview with Mike Wallace in 1957, famously said:
“I think that the greatest sin of all is bringing children into the world – that have disease from their parents, that have no chance in the world to be human beings practically.”

This hits at the root of the abortion exceptions argument.  Is a baby diagnosed with a lethal birth anomaly somehow less than human? We shout back and forth about a mother's grief, the horror of being forced to carry a baby who will inevitably die, all the while ignoring the fact that neither of these things have any relevance on the rights of the child who is a human being.

 When we legislate to allow medical professionals to respond to unborn children as less than human based on disability (or mode of conception), we cannot expect them to suddenly respond as if some unborn babies are human, just because parents choose to continue a pregnancy.
Let me explain:
While I don't view all medical professionals as cold-hearted, I do believe that for many, a poor pregnancy diagnosis is just another day at work.  Termination of pregnancy may be preferable for him/her in terms of liability, time management, and even paperwork.  In essence, it's often to the physician's benefit when a parent ends a preborn baby's life prematurely due to fetal anomaly. 

When a parent chooses to continue their pregnancy after a diagnosis, it can become an inconvenience to the physicians who have no emotional attachment to the unborn child they have diagnosed, and who often don't even view the child as human.  Even worse, for some physicians, continuing care is viewed as a waste of their time and skills.  The more patients a physician has who decide to end their pregnancies, the more accustomed the physician becomes to: a) believing his/her recommendation to be the correct recommendation (vs. a personal opinion on care); and b) believing that the patient who continued their pregnancy is the anomaly. 
When even otherwise pro-life individuals state that one person has the right to end the life of another on grounds of disability or imminent death, the door is cracked open to coerced abortion, and dehumanization.  Medical professionals efforts to manipulate women into unasked for abortions is affirmed by the willingness to look the other way for the sake of expediency.
When pro-life individuals promote legislation which includes abortion exceptions, we are directly responsible for the pain of this little family whose story I just shared -- the family who delivered their sweet baby alive just a few weeks ago.
As pro-life persons, we are supposed to be champions for families like this.  Please don't be a part of the reason they are struggling.


BIO:  Sarah St. Onge is a wife, mother of 4, step-mother of 2, and pro-life blogger for Save The 1.  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.

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