“It’s fine, she’s been grabbing me for the last half hour,” my husband grumbles as I pull my daughter’s stubby little fingers from his shirt for the tenth time. Lily Grace turns back towards me, flashes me a smile, and blows a raspberry. It’s six in the morning, and while neither one of us like being up at this hour, we can’t help but find our daughter hilarious. The thing is, a year ago, we weren’t even sure that our child would be breathing, much less smiling.
We found out that I was pregnant on our one-year anniversary, and we were beyond excited. Aside from a minor bleeding incident at around 12 weeks, things were going well with the pregnancy. I had a terrible experience with my first OB, so at around 15 weeks I switched to a different doctor who happened to be affiliated with one of the best children’s hospitals in New York.
On January 20, 2010 – one year ago today – my husband and I went to the doctor’s for the "routine" 20-week anatomy scan. It was one of those mornings where everything was going right. Even though it was mid-January, the sun was shining, and we had actually arrived on time (for once), and we even found a sweet parking spot in front of the two-hour meters!
We couldn’t wait to get another peek of out little one. When we entered the ultrasound room, the tech told us that she would do the scan and then the doctor would come in to talk to us after. As I lay on the table, my newly swollen belly covered in globby goo, the tech went through all the images one by one, measuring each precious part of our baby, being careful not to reveal the baby’s gender (this is our first, and we didn’t want to know).
I remember thinking to myself that she seemed rather somber, but I figured that she was just focused, which was fine with me. After the scan, the tech left and shortly thereafter, the doctor (who I had never met before) walked in and said, "Well, there is a big problem with the baby's head, a big problem."
This is how our journey began.
It’s not like me to forget the details, but even as I sit here writing this, I really cannot remember a word the doctor said after she made her terrible announcement.
I do remember that I started to cry, and the doctor told me, “Go ahead, you will be doing a lot of that.” I know she pointed to things on the screen, things on our baby, and explained what they were, but when I walked out of there, I really did not know what was wrong with our baby. My husband tells me I was in shock.
I started to snap out of it when I got on the phone with my OB and I heard her say, “incompatible with life,” and “the genetic counselor will be scheduling you for a termination next week.” An appointment to meet with the genetic counselor was made, but we had to wait an hour.
I will never forget those sixty minutes. Ever.
The sun smacked us in the face as soon as we exited the doctor’s office, and even though it wasn’t really that cold for January, we were chilled to the bone. We walked across the street to a little courtyard, sat on an icy bench, and waited. I remember wondering out loud why this was happening, as if my poor husband had an answer to that. Why would God give us a child only to take it away?
We paced back and forth from bench to bench, careful to avoid the glances of others passing by us. I felt empty, as if the child inside of me was already gone. That doctor took it from me the moment she walked into the ultrasound room exalting her news about our baby’s head. Our baby, a baby we would never raise.
An hour later, we picked ourselves up and made our way over to the genetic counselor’s office to plan the beginning of the end. Once we got there, the clouds parted a bit, and things got a little brighter in that small little room. We were told that the ultrasound revealed that the baby had a posterior encephalocele.
An encephalocele is a neural tube defect. The neural tube is the tissue of an embryo that becomes the brain, spinal cord, and the surrounding bones. It is a rare disorder in which the bones of the skull do not close completely, creating a gap through which cerebral spinal fluid, brain tissue and the membrane that covers the brain (the meninges) can protrude into a sac-like formation.
In the United States, encephaloceles occur in approximately 1-4 per 10,000 live births, but only 21%, or one in five, are born alive. Of those born alive, only half will survive.
This, however, was not the only issue found. The ultrasound also revealed a possible Chiari Malformation, which is an abnormal formation of the cerebellum. This malformation can be asymptomatic, or it can cause muscle weakness, fatigue, difficulty breathing and swallowing, paralysis and even death. Still, there was hope.
The counselor explained that our first option (now we had options?) was to have an amniocentesis done to determine whether there were any chromosomal abnormalities, and to undergo genetic testing to rule out any genetic defects. If there were no lethal abnormalities were detected then we would proceed to an MRI to see if the encephalocele was filled with fluid or brain matter.
Now we were confused.
We walked in there thinking that we were going to lose our baby, and now we were hearing that the baby could survive. We were cautiously informed that IF the amniocentesis came back with no abnormalities, AND the genetic screening came back without issues, AND the encephalocele was not filled with brain matter, AND the baby survived after birth, then maybe, just maybe, the baby would only have slight developmental delays.
Always the rational one, Will stopped the counselor before she could say another word and told her that there has to be some mistake because we were told that our baby would not even survive the pregnancy.
After a few phone calls, the counselor reached the doctor and confirmed that the baby appeared to have a posterior encephalocele, and while rare and potentially lethal, our baby could possibly survive that particular defect (we later learned that my OB thought the attending doctor said that the baby had an anencephaly, a fatal birth defect).
Once this was cleared up, the counselor asked us what we wanted to do.
At first we didn’t understand what she was asking, but then we realized – she was asking us if we wanted to continue with the pregnancy. I looked into my husband’s eyes and our answer was a resounding yes.
If there was hope, we wanted to keep going.
The first of many blessings to come was the fact that we were already at an amazing hospital, and we were able to do the amniocentesis and the genetic testing that same day.
Two excruciating, dark, cold and isolating days later we learned that there were no chromosomal abnormalities and no genetic defects. We had just won our first victory. Not only was this pivotal to our baby’s prognosis, but it also meant that the likelihood that this would happen in a subsequent pregnancy was very, very low. We were later told by the neurosurgeon that her encephalocele was simply a fluke.
Not knowing where to turn, I scoured the Internet for information, a glimmer of hope, or at least someone who had gone through what we were experiencing. The stories were few and far between, and the ones that I did find were awful.
Then my mom found Amelia Grace’s story. She called me and told me she had come across a blog written by the mother of a baby born with an encephalocele, and her encephalocele was filled with brain matter, but the baby survived!
As soon as I heard that, I jumped online and googled Amelia Grace and encephalocele, and that is when I found Aunt Becky’s blog. Anyone who follows AB knows how wonderfully witty and sarcastic she is, but her kindness and genuine care and concern is unparalleled.
I emailed her after we got the amnio results and she responded immediately. Her story brought my family and I the hope that we needed to get through the next several months. It was no coincidence that our MRI was scheduled on the day of Amelia’s first birthday.
I knew this was a good sign.
We met with the neurosurgeon a week later to discuss the results of the MRI, but the meeting did not go as I thought it would. I really thought that after the meeting we would have a clearer picture of the future. Instead, the neurosurgeon told us that he really could not give us statistics because so few people decide to go forward with a pregnancy where an encephalocele is detected. The possible outcomes were all over the place. There was a chance that the baby could be born with only minor developmental delays, or the baby could have severe neurological and developmental impairments, requiring assistance throughout his or her life, or the baby could be born with severe pulmonary issues, and would die soon after the birth.
At the end of the meeting, he told us to take some time to process everything and get back to him about what we wanted to do. What we wanted to do? I thought we had already made that decision. Now he was asking us again in the face of such a bleak outcome? Once again we returned to a cold, dark, and isolated place. My husband and I decided to take some time to come to our decision.
In my case, the baby made the decision for me. With each retelling of our story to various friends and relatives, the kicks in my belly grew stronger. From the very start, our child was a fighter.
Once we made the decision to go forward, we also made the decision to leave the darkness behind us. If we were going to do this, we had to have hope. We had to have faith. We had to believe. And we had to love each other. That was another blessing, the love of my husband. In a situation where some may grow apart, somehow I became closer to this man that I had known for over a decade. Putting his own fears and sadness aside, he protected my heart with every fiber of his being, and he filled our life with love and light.
The final blessing in this story was the prayers that we received from so many people. Our family prayed. Our friends prayed. Our family’s friends prayed, and their friends prayed. Even some of AB’s Pranksters prayed. It was amazing. With each prayer, I felt the baby inside of me grow stronger.
The rest of the pregnancy was rather uneventful.
After reviewing the MRI, the neurosurgeon believed that there was no brain matter in the sac, but there was no way he could be sure. Everything was wait-and-see. Still, our baby thrived. With each ultrasound, the baby got bigger and bigger, but amazingly, the sac remained relatively the same size.
I was scheduled for a c-section on June 14, but our baby had other plans.
On May 22, 2010, at 11:06am, Lily Grace Woods entered the world four weeks early. Because she was early, she needed a little help to regulate her breathing, but there were no pulmonary issues.
In fact, there were no discernable issues at all, aside from the golf-ball-sized sac on the back of her head. She remained in the NICU after her birth, and when she was a mere 11 days old, she had neurosurgery and the encephalocele was removed.
Three days later, Lily Grace Woods went home to her family, and to begin to say thank you to everyone who prayed for her.
Today Lily is thriving. So far there are no perceptible delays. She amazes us everyday. She exudes happiness, and she brings, joy, love and light to everyone she meets. I could write another 20 pages about what this experience has done to me, and some day I will.
But for now, a year after we began this weary journey, I just want to say thank you. Thank you to everyone who prayed for us. Thank you to everyone who has ever put aside their own concerns to acknowledge the concerns of another.
And thank you to my daughter, Lily, who is the strongest little person that I have ever known.