Lisa

Mom to an Angel, who left me October 28, 2010

and

James Ethan, who we said goodbye to on January 11, 2012

Holland Patent, New York

My journey began 2 years ago when I first held the positive pregnancy test. My hands were shaking and I had to rush and call my husband and tell him the news because I just couldn’t wait to tell him that we were going to be parents! Everything was going as it should, I didn’t have much morning sickness but I was so tired all the time. My first OB appointment at 6 weeks showed that my baby measured at 5 weeks, no big deal my dates were just off. There was a faint heartbeat at the time and the doctor just assured us that it was still early. So we went home, innocently excited and making plans for when out little one was able to join us.

A few weeks passed and I was already in maternity clothes, still tired but still no morning sickness. At 12 weeks I went in for another ultrasound so excited to see the baby and hear the heartbeat. Instead the ultrasound tech started to cry and said those dreaded words no one every wants to hear “I’m sorry I don’t have good news for you… your baby has no heartbeat.” Apparently our precious little angel passed shortly after my original appointment. We were blindsided, heartbroken and just in a state of shock. How could this have happened, what did we do wrong? The list of what if’s was a mile long. I felt pregnant still, I was in maternity clothes, how could my baby be dead?

The doctor’s originally diagnosed me with a missed miscarriage and I had a D&C the following day. 2 weeks passed and I was just getting adjusted to my life again and waiting to TTC again. Then my phone rang and the doctor delivered more bad news. I had had a Partial Molar Pregnancy, I needed to have weekly blood work and be monitored for up to a year to make sure that everything resolved. “When can we try again?” I remember asking him and felt like the wind was knocked out of me when he answered a year. I had never heard of a PMP before so I had so many questions, what did this mean for our fertility, how did this happen? After doing a lot of research online I was completely scared seeing words such as “cancer” and “chemo” along with my search results.

I went in that day for my first HCG blood test, I needed to have this monitored to make sure that it fell back to negative or else the molar cells were re-growing in my body. First week came back at 24,287. I knew I was in for a long journey to under 5. Second week: 16,587, third week: 9609. By the fourth week the nightmare really began… 8679. The HCG is supposed to drop by 10% each week or else it flags a problem. This drop was hardly 10% so they made me come back after a few days and the result was 8585. I had begun to plateau. They sent me to a specialist 5 hours away where I was told I had Persistent Gestational Trophoblastic Disease, a form of cancer, and that I needed to start chemo.

Luckily I only needed 1 round which consisted of 4 shots over a week’s time. I didn’t lose my hair or have any of the normal side-effects of chemo but I remember being unbearably tired, and my blood pressure got really low making me very dizzy. I spent Christmas Day 2 years ago in the hospital as an outpatient waiting for my chemo instead of being 5 months pregnant. Then in the beginning of the new year I got my period followed by the worst pain I could imagine. Fearing the worst I was rushed in for another ultrasound where the doctor saw that I had retained tissue. My specialist over the phone reassured me that this was the chemo working,  that all the tissue was being expelled but the pain was unbearable and I underwent a second D&C on Jan. 8th. Finally on Jan. 24th my bloodwork came back negative… the health nightmare was over and I could begin to emotional heal.

The grieving after that nightmare was the worst. Everyone around me just assumed that I would be “over it” by now. But how can one properly grieve when faced with all that? The time went by faster than we thought and after only 2 months of TTC we were once again holding a positive pregnancy test in November 2011. I was beyond excited again, this was it. I was monitored closely this time and went in for HCG checks every 48hours to make sure things were doing as they should.

By 6 weeks pregnant my HCG stopped doubling, a red flag for an ectopic pregnancy so I was rushed in for an u/s. This one revealed that the baby only measured at 4 weeks but that it was not an ectopic. There were some suspicious things on the u/s and my doctor was concerned for another molar pregnancy and even scheduled a D&C. Feeling numb we never questioned any of it but my specialist did. He told us to wait it out a couple more weeks and see what happened. Sure enough 2 weeks later there was our perfect little baby measuring at 7 weeks with the most beautiful heartbeat. Our miracle we thought.

By 12 weeks I was feeling pretty confident again and went in for our last 1st trimester ultrasound. Once again the ultrasound tech looked at the ultrasound and said “There are some things that concern me, I need to get the doctor.”  What could possibly be wrong with our little angel? I saw the screen, it looked so perfect.  The doctor came down and looked very concerned but told us that he was going to send us to see a specialist at the Perinatal High Risk Center for a Level II ultrasound but what he saw he didn’t like. All I can remember is “severe neurological abnormalities.”

Numb we went home to await the appointment. I researched everything I could and the few abnormalities they mentioned pointed towards Down syndrome. Now that I could handle, I remember thinking and I began to get hopeful again. 2 days later we arrived at the appointment where the doctor did an ultrasound that lasted forever. Afterwards she asked if we wanted to go through the pictures or just go back to the office to talk. I wanted to see my baby so she went through the pictures. The list of problems seemed never ending… the organs were growing on the outside, the heart wasn’t in the right place, the umbilical cord was short, the legs weren’t growing, no bladder, etc etc. All added up to Limb Body Wall complex or Body Stalk Abnormality. A fatal congenital abnormality. “But your baby has a heartbeat and is moving”

I was once again blindsided by this. I was reassured that it was a fluke, another unrelated bad luck pregnancy complication that was unlikely to happen again. We were faced with the tough decision of carrying to term or ending it. I sat there thinking how desperately I wanted to hold my little baby. Then I was told that if my baby did live to delivery I would need a c-section because of the cord length and my baby would only live a few minutes. Due to a previous scoliosis surgery when I was a teenager a c-section meant that I needed to be put under. I wouldn’t even get to see my babies few breaths or hold him while he was alive. I just couldn’t bear it. I couldn’t emotionally handle carrying him to term.

I made the heartbreaking decision to have a D&C and said goodbye to my baby 1/11/12. 6 weeks later we found out that we had lost a son and named him James Ethan. I still miss my angel and James every day.

You can contact Lisa at lgouger@twcny.rr.com.

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Comments

  1. Dora Goodlett says:

    Nice to finally see a story about lbw on here. Very heart breaking! I was faced with the same heartbreaking decision but I was already 6 months pregnant when I found out so it was clear I could only carry to term. No regrets here but I can understand your outcome. In a lot of ways this makes me so happy I didn’t find out until I was so far along and enjoyed the time I had with my angel. I’m very sorry! Just a side note for you… I now have a very healthy one year old :)

    • Lisa says:

      Thank you for your support, I don’t regret my decision but sometimes wonder what it would be like to be able to have pictures of my son but just knew I couldn’t face it. I am happy you have had a healthy pregnancy since then, I am really worried about that given the 2 flukes.

  2. Vanessa Howell says:

    Lisa, to hear your story again, it still breaks my heart.

    You know we are all waiting for your next positive pregnancy test. I know all too well the complications with a Molar pregnancy, but unlike you, mine was a Complete Molar Pregnancy and I too didn’t find out until 12 weeks. I also had to under go chemo for the Persistent Gestational Trophoblastic Disease, only I was unfortunate to have to have 7 treatments of Act-D, and right now I am waiting for the next few days to pass so I can hold this new little one in my arms, so you know it is possible to have a healthy baby after the ordeal you and I both went through!

  3. Marissa says:

    Hi Lisa,

    Thanks for sharing your story. It’s comforting to know that there are others out there whose baby had the same defect and the same struggle to either carry to term or terminate the pregnancy. It’s certainly not an easy decision. I decided to carry full term and gave birth Sept. 13th, 2011. He lived about 40 minutes and it was a blessing to meet him. However, I get these haunting feelings of wondering if he suffered or was in pain for those short 40 minutes…. I think if I chose to abort I would have similar haunting feelings but just wonder what it would be like to meet him instead. I don’t have regrets and after this experience I don’t judge anyone for their decision to abort in this type of situation. Either decision is tough and ultimately we wish that in the end we could have a healthy baby to hold. Good luck to you and hope that you find peace in your experience.

    Marissa

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