Honored to be able to share this dear friend's story on the Body Politics blog. Such strength, courage, and love. I hope it moves you as it did me. -M
I didn’t know if I wanted kids.
I was never that woman who felt like her sole purpose in life was to procreate. I do not put down anyone who feels that way. In fact, I was always envious of that woman. Who knew exactly what she wanted and could not wait to start a family. That just wasn’t me.
When we finally decided to try and get pregnant---at almost 34 years old---it had something to do with the way I felt about my sister. She is 12 years younger than me and, at times, felt like my little baby girl. If I could love another human being as much as her, I knew I wanted children. Well, at least one.
I always like to have a plan. I like to think things through and have control over situations in my life. It took me eight years to get engaged. Two more to get married. And another two to get pregnant. I wasn’t going into this without a plan. I should have told my friends with kids about this plan. They would have laughed at me. Smacked me upside the head. Told me to take my plan to Mount Doom in Mordor and destroy it. There is no planning parenthood.
At around 15 weeks, the lab was supposed to run a test for genetic disorders. We found out at our next visit that the test was never run. No big deal, they said. We have another test we can run. A few nights later, we got the call. There was a possibility that our baby could have down syndrome. We wouldn't know for sure until we did another test. The results would come back in two weeks.
This period, I would have said then, was the longest two weeks of my life. Months later, this record would be beat. Family members talked to us about terminating the pregnancy. We decided, together, this is not something we would, or could, do.
After two weeks of worry, we got a call that our baby did not have a genetic disorder. AND we find out we were having a baby girl. Finally, we could relax and enjoy the excitement of the pregnancy. I started thinking about the baby shower, the nursery, baby clothes, etc.
That excitement and relaxation lasted one full week. We walked into our 20 week scan, excited to see our baby girl. The doctor was very quiet. We assumed he just wasn’t much of a talker. Finally, my husband broke the silence and asked if something was wrong. His response was something like, “I’m not sure. I might see something here.” I can’t remember much of what he told us after that. I am not sure what it feels like to go into shock, but I’m guessing it was something like the way I felt that afternoon. The words that still stand out:
mass
not sure
decent size
see another doctor
We had to make phone calls. Set up appointments. See specialists. Our baby had something in her chest and her heart was on the right (wrong) side of her body. We left with phone numbers and a minuscule amount of information that there might be something wrong with our baby.
We went to a fetal heart doctor who checked the baby’s heart beat. He said it was strong.
Next, we went down to NY Presbyterian to see a doctor who could tell us more. Another scan. There was definitely a somewhat large mass or cysts where her lungs should be developing. And it was pushing her heart to the right (wrong) side of her body. This was the only definite answer they could give us. The other questions couldn’t be answered.
Will the baby survive the pregnancy? We don’t know
Will she be able to breathe after birth? We don’t know
Will the mass get bigger? We don’t know
Will this cause problems for the rest of her life? We don’t know
Will she need surgery? We don’t know
Will this cause complications during delivery? We don’t know
What should we do?
We don’t know.
After a conversation with the doctor and many unanswered questions, we were left with this:
We don’t know what is going to happen.
The mass could get larger. It could cause heart problems.
The baby could not make it full term. The baby could make it full term, but have difficulty breathing.
The baby could make it full term and need immediate surgery.
The baby could make it full term and be fine.
We heard words and terms we’d never heard before: hydrops, cvr, ccam/cpam
If you want to terminate the pregnancy, you will have to make the decision in the next couple of weeks.
While this was not something we were considering, the impact that this sentence had on our lives is something that I will never get over. Why were they even making this statement? Did they think there was no hope? Would I be bringing a baby in this world only to make her suffer?
Why is this happening to us? What did we do wrong? Is it our fault? Is this because I wasn’t sure I wanted kids?
I need a plan. I need a plan.
Moving forward, the only thing in our power to do was to drive down to NY Presbyterian in the city every week for the remainder of the pregnancy for ultrasounds. Each week, my husband and I drove down in silence, praying, hoping that the mass was not getting bigger. Praying and hoping that our baby was getting stronger. Each week, we were told the mass stayed the same size. Though it was not shrinking, it was also not getting bigger - a "good" thing. We could take a breath. Feel relief for that moment. And then wait for the next week.
We repeated this cycle for months. Each time, relief that the mass was not getting bigger. Each time, questions unanswered. We toured the NICU. We were told that it was almost definite she would be rushed there. There would be a team of doctors, surgeons in the room for her birth in case she needed assistance breathing.
We had to be normal and go about our lives. Go to work. Pay our bills. Make small talk. Deal with the everyday hassles.
And wait.
Some days, I could hold it together until a night time shower. Other days, I broke down the second I pulled out of the parking lot at work.
When she finally arrived, three days late, she was crying and screaming. I burst into tears and repeated over and over, “She’s crying! That’s a good thing, right?” The doctors informed us that she was breathing on her own and didn’t need to go to the NICU. I told them to check her again - to be sure.
Later, they did an x-ray to check the mass. It was still there and would have to be removed. But, for now, we could take her home.
Our miracle baby was going to be okay.
At four months old, she had to have surgery.
Half of her lung was removed. The time between her birth and surgery was even more heart wrenching than the pregnancy. It’s something I’m not ready to talk or even write about.
But as we are approaching her first birthday I am finally able to talk more about the pregnancy. I told myself I started writing this as a way to help others going through similar situations. When we first found out about the ccam/cpam I desperately googled and did not find much helpful information. The one major thing that helped me during this time was finding 2 facebook pages for parents of ccam babies. I read stories of these amazing, beautiful, strong babies and connected with people who could understand. They gave me hope. With the support from these strangers, and prayers from friends and family, we made it. She made it.
I decided to finally write down our experience to maybe help others going through similar situations. I think, in the end, writing down our journey became more of a way to help myself - a way to finally take a small breath.
Our beautiful baby girl is turning one next week. She is healthy. She is happy. She is strong. She is here.
I am beyond grateful.
I hope our story will help others going through a similarly tough time feel connected. I hope our story will bring hope to other families.