Willow, Our “Back to the Future” Baby

Posted on Posted in Hypoplastic Left Heart Syndrome, Induction/L&D, Stories

By Mrs. E.

Getting the News

Back to the Future onesie
It hurt terribly to know that our “Back to the Future” baby had no future at all.

I was so excited when I saw that my pregnancy test was positive! It was the weekend before Valentine’s day, and I decided to surprise my husband with a “My First Jaguars Football Book” which I’d bought a long time ago and saved just for this day. Giddy and bursting with happiness, I gift wrapped the book along with my positive pregnancy test.

When he got home from work I said I had an early Valentine’s gift for him. He seemed a little confused by his early gift. I was smiling ear to ear. He opened the gift and eyed the test stick, still baffled. Before he could even ask the question I shouted out “I’m pregnant!” He couldn’t believe it. It had only taken us two months of trying. My husband was elated, crying tears of joy. I did too. We never imagined then that in four months time our tears would be of great sadness.

First Trimester
My first trimester was a little bumpy. Even though I’d had a flu shot, I contracted the flu at five weeks along, and began bleeding a little. My gynecologist put me on Tamiflu, as pregnant women are susceptible to further complications if the flu is not treated. I thought the bleeding might mean I was miscarrying. My primary care doctor told me that was possible and I should “prepare to mourn.” I was devastated. But then my blood work came back positive for pregnancy and we heard the heartbeat at a 6-week gynecologist appointment. We were relieved and overjoyed. My baby’s heartbeat was the happiest sound I’ve ever heard.

The rest of the first trimester was typical. I didn’t feel like eating and was exhausted. I took care of myself, exercising lightly, resting, avoiding alcohol and particular foods and trying to abide by The Healthy Pregnancy Book my good friend had recommended.

Second Trimester
By the start of the second trimester I felt great. My appetite returned, I had a little more energy and I was finally starting to show. I teach third grade, and at this time I shared our exciting news with family and the faculty, staff and my students. My mother-in-law, a loyal volunteer in my classroom, helped me create a fun pregnancy announcement with my students. My principal wrote the news on the large white board in the teacher’s lounge, “Mrs. ‘E’ is Pregnant! Due October 2015!” I loved walking past the words every day. I continued to share the joy with my students playing “Guess That Size!” every Monday and sharing the comparative fruit or vegetable size and other major developments in Baby E’s growth according to the pregnancy app. It was my favorite part of every Monday. The students and parents showered me with gifts and congratulations. I felt loved and happy.

The 20 Week Appointment
We were excited to finally get another picture of the baby and hear about other developments at our 20-week appointment. We wanted to see if they’d give us an updated due date. My husband hoped Baby E. would be born October 21st, 2015 because that’s the day Marty McFly went to the future in Back to the Future II.

We both like being silly to keep things positive and fun, and finding things to laugh about. But I was nervous about this appointment. I couldn’t help but be concerned about the flu I’d had earlier and whether it affected our baby. My husband reassured me, “Now that you can feel the baby kick, how could anything be wrong?” I wish so much that he had been right.

Getting the Diagnosis
We went to a specialized obstetric office downtown where they would take all of the measurements and check on our baby’s progress. We told the ultrasound technician that we didn’t want to know the gender—we wanted it to be a surprise. She said she’d have us turn our heads when the time came.

She looked at all of the baby from head to toe, taking measurements and capturing images. She spent an extra long time looking at the heart, but I figured maybe that’s just what they do. I had no idea what we were looking at. She snapped some ultrasound images for us: a head profile, our baby’s face and precious little feet.

The doctor came in and also spent a lot of time studying the heart. A cold silence fell over the room. My husband and I began to realize that something must be wrong. The doctor looked closely at the images the technician had captured and started minimally describing our baby’s heart. But he wasn’t reassuring us that everything was okay.

Beginning to panic, I asked “Is this what it’s supposed to look like?”

“I want to take a closer look and take more pictures and measurements,” he said.

He continued with the ultrasound, looking and clicking and staring at the screen with reds and blue splotches flashing like chaos in a horror movie. My husband later shared that this was the worst silence of his life.

The doctor finally told us our baby had Hypoplastic Left Heart Syndrome. According to his measurements our baby’s left ventricle was only half the size of the right and that they should be equal in size.

I couldn’t believe what I was hearing. “Can it still grow?” I asked, “I’m only 20 weeks.”

He simply replied, “No.”

I burst into tears, and he said he was sorry. He drew us a diagram and continued explaining that our baby would need open heart surgery immediately after birth. He said heart defects are sometimes a sign of chromosomal issues, and recommended the amniocentesis. We agreed. The procedure was short and painless.

We left the office devastated and struggling to keep our composure. The minute our car doors closed we both began to sob. We got home and researched Hypoplastic Left Heart Syndrome. We realized quickly the severity of the heart defect as we read about babies needing a series of three open-heart surgeries before the age of 3 in order to survive. We began researching the best heart hospitals. We would settle for only the best care for our sweet Baby E.

The Hospital Visit
A few days later we went to a pediatric cardiologist for another ultrasound and a fetal echocardiogram, and a consultation with the pediatric cardiologist. During our long wait in the waiting room I felt sick to my stomach. An ultrasound technician called us in and spent a lot of time taking more pictures and measurements. We held our breath waiting for the doctor. She finally came in and also took a look, taking more pictures. Again with the red and blue flashes; we wondered if what they meant were good things or bad.

The doctor left and then returned with a diagram of our baby’s heart. She said she could hardly see a left ventricle, and that our baby was a candidate for the Norwood series of three open heart surgeries which would re-work the heart so that the right ventricle would do all of the work. She felt the baby would have a 70% chance of surviving through all three heart surgeries. She explained how the surgeries work and at what ages our baby would have each of them.

She told us the surgeries were not a “cure.” She said there would be a honeymoon phase where our baby/toddler would possibly have no complications if he/she made it through the surgeries, but that later in childhood health complications would increase because the right side of the heart would be doing all the work and this would take a toll on the rest of the body. I felt saddened by every word coming out of her mouth, but what she told us last crushed me: She explained that this heart could not sustain a lifetime and that it could only sustain the child into their teenage years. As a teenager, our child would need a heart transplant.

Tears rolled down my face. I felt foolish having assumed putting our baby through the three open heart surgeries would make the baby okay and allow him or her to lead a somewhat normal and healthy life. We began to come to terms that this would not be the case.

The doctor gave us four options: 1) The Norwood series of three open heart surgeries, a lifetime of health complications and eventual heart transplant. 2) Compassionate care, which meant carrying the baby full term, giving birth and administering pain medications while allowing our baby to die “naturally.” 3) Seeking a heart transplant immediately after birth, although newborns awaiting transplant often die waiting because there are few newborn hearts available and those that become available go to babies who don’t have an option for other surgeries. 4) Termination of the pregnancy.

Realization
By the time we got home, I was angry. My heart ached as I realized that the life I had hoped for my child simply could not be. I’ve always been one to try to do the right thing, but what was right? We did all the research we could. We got a second opinion to confirm the diagnosis. According to the March of Dimes website, Hypoplastic Left Heart Syndrome was first on the list of the most critical congenital heart defects. We knew from research that our child would endure life-long medical complications, and that was if our baby made it through the three open heart surgeries. There was no right answer.

We got the chromosome results back and they were normal. I prayed that there would be a sign, but there wasn’t. Nothing helped us. We had to make this heart wrenching decision on our own. We looked carefully at the facts and finally made our decision.

Keeping our baby alive, putting him/her through all of those surgeries and hospital visits for the rest of his or her life just so we could keep our baby (who may or may not have survived) seemed selfish. We decided we needed to say goodbye to our sweet baby, and suffer so that our baby wouldn’t have to. We would allow our baby a peaceful death.

Termination
I had never been so scared in my life. I would not be allowed to deliver my baby in a hospital as I wished I could have. I would need to go to an abortion clinic. In my city, it’s illegal to terminate a pregnancy after 13 weeks. I was almost 22 weeks along, and the latest the procedure can be legally performed in my state is 23 weeks. We would need to drive to Tampa, Florida, three and a half hours away. This felt like further punishment, like I was a criminal having to escape to somewhere far away just to do the most compassionate thing for our baby. I feel like my city has betrayed me.

The procedure took three days, the most painful three days of my life both physically and emotionally. Thursday, June 18th we went to bed saying goodbye to Baby E. The next morning I woke up and I knew our baby was gone. I cried. We both loved our baby so much already. It hurt terribly to know that ourBack to the Future baby had no future at all.

I was supposed to be put to sleep for the third day of my D&E procedure where they would take Baby E, but in the end it happened so fast that I ended up delivering our baby stillborn in a private waiting room for mothers like myself who were terminating wanted pregnancies. My husband was with me and helped me deliver. I had no pain medications. My doctor said she was sorry that she couldn’t give me what a hospital could.

In the end I am glad I was able to deliver my baby. It wasn’t easy, but because I was awake the entire time I know exactly what happened to my baby and my own body.The nurses and doctor were very kind to me and I’m incredibly grateful for this. I wasn’t prepared for any of it. I was thrown into a tumultuous ocean and trying not to drown. I was just trying to make it through this horrible storm alive.

Looking back, I wish now that I would have had a proper burial or ceremony for my baby. I wish I would have asked to see her and would have been able to hold her just one time, but it all happened so fast and it’s too late now. The only thing that gives me peace is knowing my baby died peacefully inside my womb.

June 21st, 2015
Our first wedding anniversary, and ironically “Father’s Day,” we spent driving home from Tampa, relieved that it was over but filled with deep sadness. I had bought my husband an “I am the Future” onesie a month earlier as a Father’s Day gift. It now sits in a memory box one of my student’s families gave me, along with our baby’s footprints, hand prints and the couple of pictures we got of our Back to the Future Baby.

We learned two months later that we’d had a girl. It felt right finally finding out our baby’s gender. We named her Willow, after the weeping willow tree, an amazing and beautiful tree that will forever be a part of nature, just as Willow will forever be a part of us, but still a tree that “weeps” as we will forever weep for our sweet baby girl.

 

 

Image: property of the author, used with permission