Waiting for Hope:
Patience in the Present,
Faith in the Future

Diagnosis: Spina bifida
Myelomeningocele, Hydrocephalus,
an Arnold Chiari II Malformation

By Robyn

After trying for over 8 months to conceive, on December 26, 2012 my husband and I found out we were expecting our first child. We were overwhelmed and excited with emotions. My pregnancy was going wonderfully. Although I was tired a lot, I hadn’t had too much morning sickness and after my first trimester felt the best I’d ever felt in my life. I was eating good, working out, taking my vitamins, and not even thinking about doing anything that would negatively affect the pregnancy. We kept it a secret for 9 weeks waiting for our first ultrasound to rule out any abnormalities and check for a viable heart beat.

In early February, we had a good report and decided to share our happy news. We surprised my parents by taking them to a hockey game and announcing “congratulations to first time grandparents…” they couldn’t believe it. Our family and friends were elated. The next 9 weeks went by, worry free. Everything was going great! I was barely showing weeks in to my 2nd trimester. We couldn’t wait to have the next ultrasound to confirm the sex, and have the routine blood work done to put away any worry with regards to possible complications.

On April 3, 2012 at 18 weeks pregnant I had the regularly scheduled quad blood test and an ultrasound scheduled the following week. A week after my blood test on April 10, 2012 I was told that my AFP levels came back abnormal and were high risk for the baby having spina bifida. My OBGYN told me not to worry that most the time the tests are false positives, and that I have no genetic history of any abnormalities so I should be just fine. The next day on April 11th we were sent to a fetal medicine clinic specializing in neural tube defects to confirm or deny the diagnosis. Meeting with the genetic counselor prior to the testing and ultrasound gave us some hope. She explained that the chance of our baby having spina bifida was about 3%. My husband and I were praying for a false positive reading and a healthy baby.

However we were filled with false hope. After my level II ultrasound the doctor confirmed that our baby had spina bifida. I couldn’t even process the medical information that was being spewed at me. Our baby was diagnosed with Myelomeningocele, Hydrocephalus, an Arnold Chiari II Malformation, along with other potentially fatal anomalies. We were able to get an appointment immediately with my regular OBGYN who explained the detrimental defects. He told us the Myelomeningocele was the most severe form of spina bifida. Our baby had two open areas mid spine, and by the cerebellum (back of the neck and brain stem.) Because of this there was an Arnold Chiari II malformation (enlarging or displaced part of the brain.) He explained that we’d be lucky to deliver at full term or that the baby may not even survive, should it be born. He told us that should the baby survive (even after surgeries to close and fix the open spina bifida) it wouldn't walk, would have urinary and bowel incontinence, and, as there were signs of hydrocephalus (fluid on the brain), would have mental and learning disabilities, and would most likely not be able to feed, see, hear, or communicate. Also, there were already signs of organ failure as the kidneys not properly functioning.

After hearing all the news in layman’s terms I still couldn’t believe or process what I was listening to. We were asked to make a decision no parent should ever have to make. The rest of that day I still couldn’t believe what was happening. I researched and Googled all the medical terms and stories online, I prayed (as we had every day since we found out we were pregnant for a healthy baby), I cried, I worried, I didn’t know what to do, but I knew what I had to do. My husband and I decided that it ultimately wouldn’t be fair for a child to endure surgeries or not being able to mentally or physically function. Still, knowing that didn’t make the whole situation any easier. My husband and I made the painful decision to medically terminate the pregnancy.

I was admitted in to the hospital on April 12, 2012, was medically induced, and was told it would most likely take 24 hours for me to deliver. I was told that the pill they gave me to induce labor would start working in about 12 hours. It didn’t work orally after 3 doses (1 every 4 hours) so I had to be given it vaginally (at the same dosage and time). The process was emotionally uncomfortable, and physically painful. They gave me medication for anxiety, pain, and something to help me try to rest. I wish they could have done that for my husband too. He was there and has been every step of the way. The waiting, labor, and delivery was agony.

On April 14, 2012 at 4:44 A.M. I finally delivered our baby. We were told it was a girl; she was 19 weeks 1 day old and weighed only 9 ounces. She was breathing. I didn’t know how to react. I was scared to look at her, to have that image along with this horrific experience burned in to my memory. My husband and I chose not to hold or see her as we couldn’t emotionally handle it at that point in time. The nurses took her away and we agreed to have pathological tests performed upon her passing. The hospital made us fill out birth and death records as it is the law in the state of Florida. We didn’t know what we were having prior to that time…much less have a name picked out. It took us over a week to think of a name. We knew we had to file the paperwork with the county office and didn’t want it to be “no name” or “baby girl” on record. We picked the name Aaliyah, meaning rising to God; highly exalted. I received her records in the mail the other day. They said she lived 6 hours and 32 minutes, passing away at 11:16 A.M. on the same day she was born, April 14, 2012.

The next few days following the delivery and passing of our daughter were difficult for both my husband and me. Thank God for him because he has really been my rock, and just when I felt I couldn’t love him more this experience has made us closer than ever. We were both grieving in our own way. I felt mentally and physically empty inside. I was tired, cramping, bleeding heavily from a breached delivery, and my milk was coming in. Emotionally, I was dealing with guilt and questions I couldn’t answer. Had we made the right decision? Should we have given it more thought or time? Did I not believe in God enough to save her? Should we have let nature take its course? Was she in pain? Should I have held her? Did she feel alone? Was she in heaven? Did I cause this? What could we have done differently? If we made the choice to terminate because of health reasons, yet I physically delivered a baby, does that make me a mother? The questions, feelings of regret, and “what if” scenarios wouldn’t end, and to be honest they still haven’t.

On top of my sadness and guilt I am also now feeling angry, scared, and anxious. I am irritated that people who are drug addicts, or abusive and don’t deserve children are blessed with the privilege of being a parent. I am envious of my friends and family, even though their hearts break for me, they are able to not be fixated with grief and go on with their normal lives. I have begun having nightmares that the nurses are coming in to check vitals, give me more pills, and that I’m going through labor all over again. My husband said he woke up to me squeezing his hand and yelling his name. I remember everything so vividly. I remember telling my husband during my contractions that I couldn’t do it, that didn’t want to do it because I didn’t know how. I remember thinking if I do it, that’s it, it’s over, and our baby is gone.

I have frequent flashbacks to the entire series of events: passing out during quad test blood work; the voice mail from my doctor about a problem turning up; the appointment with the genetic counselor; seeing my baby move during the level 2 ultrasound; hearing the reality of our baby’s health; scheduling the hospital appointment to terminate the pregnancy; my water breaking; the doctor removing my placenta after my baby was delivered; just wanting to be discharged and go home; the car ride home; silence in the house; sobbing; panic attacks on the kitchen floor; tearing our house apart like a white tornado; trying to relax at the beach; horrible guilt about every decision; feeling I'd lost my mind; returning to work and explaining what had happened. And then it all starts replaying again.

I know I am depressed over this traumatic experience. I’ve been depressed before, but this time it’s different. I know people say with time “this too shall pass”. However, every day I am distancing myself more from my family and friends. I engross myself in work because I can’t stand for anyone to ask me how I am; treat me like I’m damaged; take one more person’s hug; see the mortified look on their face, or explain to somebody who hasn't heard what’s happened.

People have been telling me their personal stories of what’s happened to them, or a family member, or friend. But, my story isn't like theirs. I didn't just have a miscarriage, it wasn't just something that "happens sometimes," it wasn’t a normal D&E abortion, and it’s not like anything they want to share with me. I don’t know how to make them understand what I’ve been through, and what I’m feeling. I don’t know how to move on; I don’t know that I ever will.

I stumbled upon this website tonight after researching on the web “help for people who have had to medically terminate a pregnancy.” The site's name spoke to me… "A Heartbreaking Choice". That’s exactly what it was. I began to read other parent’s stories and it helped me in this moment to know I’m not alone. I, like every mother on this site, struggle with the grief and never ending questions.

I struggle with the feelings of wanting or even being able to have another baby. Doctors say that if you’ve had a child with neural tube defects the chances of having another with spina bifida doubles, yet normally there is a 1 and 1,000 chance if you are healthy. I have recently learned through follow up blood tests that I have folic acid deficiency. So, I guess there are no guarantees.

Today, May 12, 2012, it will be 4 weeks (nearly a month) since the birth and death of my daughter. With Mother’s Day approaching tomorrow I am dealing with feelings of reflection, remembrance, and other new emotions that are emerging. I can say the nightmares are becoming less. I am still bleeding which is a constant reminder of what I’ve been through. I am still sad whenever I look down at my belly and remember looking and feeling pregnant. I still fear what may come. I think about where we’ve been, and where we go from here.

I do believe I am learning to accept what has happened. I’ve recently looked back at the pictures the hospital took of our baby girl, and the hat and booties, the nurses made. 30 days ago I couldn’t believe somebody would have done that, I thought it was insensitive. While it still tears me up, I can look at the pictures, I mean really look…at her little hands, and toes, and face. Even though she doesn’t look like a baby she looks like a 19 week old fetus I am glad I can see her. It makes it easier to pray for her.

I guess that’s all we can do…is pray, and take each day as it comes. I was told that ... “the weight you carry on your shoulders is much too heavy for one human being. Give some of that weight where it belongs, - to God, and have faith whether you understand it or not”. I want to have faith, and give others who have been through this experience hope, but I need to find it for myself. Until then I am waiting for hope and will try to be patient in the present, and faithful in our future.


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