“In March of 2017 my Poppy passed away surrounded by his family. Seated at the end of his bed, our eyes locked. I tried to connect my heart with his. My husband Mike and I had struggled with infertility for three years. Staring into my Poppy’s eyes I asked him to pick out a baby for us when he got to heaven. He passed away just moments later. Before his burial I kissed his cheek and again whispered in his ear to send us a baby. This time I added, ‘make it a girl.’
Four months later while getting ready for work, I noticed a pregnancy test on my dresser. I grabbed it and went off to the bathroom like I’ve done so many times before. I dipped the stick and set it on the side. I had almost forgotten about it when I looked over and saw two dark pink lines staring back at me. Mike had left for work already. I was alone in the house at 5:30 a.m. I looked up at the ceiling and said, ‘you heard me.’ I knew my Poppy picked our baby. I left work early and waited for Mike to get home. I told him I had an early birthday gift for him and gave him the positive test. I recorded his reaction for us to always remember the happiness and excitement we felt in that moment.
I called my OB and got an appointment a few days later. At 6 weeks and 3 days I was told not to expect a detectable heartbeat yet. The doctor turned up the sound and there it was. A fuzzy cotton ball with a strong heartbeat. I couldn’t believe my eyes or my ears. As my pregnancy progressed, I was lucky not have any morning sickness. Aside from extreme fatigue I was feeling great and we were so excited. During the first appointments they took blood to test for genetic abnormalities. We received the all-clear at around 16 weeks. After breathing a sigh of relief, a nurse came in and said they ‘forgot to check off the Spina Bifida test’ and would need to run that one on its own. I figured it was no big deal and we’d be fine just like before. Only they didn’t forget. They got an abnormal result the first time and wanted to test again to be sure. A week later I got a call at work saying the test showed ‘elevated protein levels’ and they wanted us to see a genetic counselor. They assured me that sometimes these tests aren’t accurate and told me not to get upset. Too late. I was a nervous wreck. They made me an appointment right away. My husband was working in the city that day but I convinced him (and myself) nothing was actually wrong and he could continue working. I asked my best friend Nicole to come with me for support.
We were brought into a tiny room with a small round table. On the table was a box of tissues which made me feel uneasy right away. The genetics counselor pushed a piece of paper at me with handwritten numbers that read ‘one in fourteen.’ Those were the odds of my baby having Spina Bifida. One in fourteen. I broke out into tears. Those weren’t good numbers. As I sobbed in my seat my best friend became my ears and retained all she could. They wanted me to get an MRI and an advanced anatomy scan ASAP. While still in that small room the doctors laid in quickly about what this diagnosis would mean for my unborn child. They didn’t yet know what level her lesion was. There were so many unknowns then. What I know now is there is no way to tell the exact impact there will be on a baby through these odds and images. However, the doctors seemed pretty sure what her life what going to be like and it didn’t sound good. This was the first time I was offered termination of my pregnancy. They insinuated we were young and we could have other children. I cried even harder. This was not an option for us. Our baby was wanted and loved. God entrusted us with her and we weren’t going to let her down. We’d deal with whatever was to come.
Coincidentally, this appointment fell on the same day as my 3D gender sonogram. I was determined to have the happy day I had been planning for. We went off to my appointment. Back at home holding this exciting envelope I had to tell my husband what our baby’s odds were for having Spina Bifida. Mike didn’t say much. He wanted to open the envelope. She was a girl. The girl I asked my Poppy for. We named her Annalise Nicole. The most bittersweet moment of our lives.
A couple weeks later we held a gender reveal party for our friends and family. Even after some time I was unable to tell most of our family about Annalise’s diagnosis. I was hiding this secret while watching my mother and mother-in-law cut into our cake. I felt like I was letting everyone down. I was giving them a broken baby.
I went to a Maternal Fetal Medicine doctor for the advance anatomy scan. Three different techs were needed to find the opening in her back. They said it was probably very small. I held my breath hoping it wasn’t there at all and they were wrong, but they found it. Our doctor recommended we travel from our home on Long Island to Philadelphia to be seen at CHOP. After going through another long anatomy scan and another MRI we were taken to a tiny room. We were sat at a small table with a box of tissues on it. Great. Their genetics counselor entered the room with a model of a brain and spinal cord. They explained they believed her lesion was between the L3/L4 vertebrae. They also confirmed Annalise had the most severe type of Spina Bifida, Myelomeningocele. Spina Bifida is a neural tube defect. In the first 25 days of pregnancy while the fetus is forming, the spinal canal and backbone don’t close properly or at all. In Annalise’s case she was left with a complicated hole the size of a pinky finger nail that exposed her spinal cord and nerves to the damaging effects of amniotic fluid. Depending on where the lesion is located the effects can be minor to severe. At every appointment, doctors gave the worst case scenario. They explained she will have hydrocephalus, a condition where the fluid in the brain cannot drain properly and build up in the ventricles causing pain her whole life, an enlarged head and other issues. They said she’d need a shunt. They told us she would be paralyzed for sure and would never walk, she’d have no control over her bladder or bowels, she could have severe intellectual deficits. We were told she would have clubbed feet and need casting and surgery to straighten them out. The little things people take for granted when a baby is born would not happen for us like my husband cutting the cord or being shown my baby right after delivery for a photo. She would be whisked away and they’d assess her exposed spinal cord. I was also told I wouldn’t hold her for up to 5 days until her back healed enough to where it was safe.
So what now? The genetics counselor and maternal fetal medicine doctor explained there was a surgery that could be done to close this opening while I was pregnant. It would have to be done through my belly by cutting into my uterus to expose her back. I’d have to be on bed rest, I could develop an infection. I could lose her after this surgery before she is even born. If I had this surgery though, it could increase the chances of Annalise being born healthier and with greater chances at better leg function, bladder and bowel function and decrease the risk of brain damage. I was ready to commit to surgery and help my baby. Then they told me I didn’t qualify. My BMI was too high. There are very strict parameters for this surgery. If I was just an inch or two taller, I’d be able to do it. Why even give me this option knowing I didn’t qualify? I felt like I failed her again. I was too fat to save my baby. Maybe that’s why she has Spina Bifida? I blamed myself very harshly for a long time. We decided to continue our care at CHOP because they told us they were the best around. We’d travel all winter from Long Island to Philadelphia at least once a month. We continued to see the high-risk OB for routine appointments as well. We ended each appointment being offered termination. ‘You have X amount of time to make a decision,’ they’d say. Finally, we asked him not to bring it up again. They continued to inform us by law until there was only one day left. I’ll let you imagine how we told him ‘no’ that one last time.
We continued our care at CHOP and developed relationships with our counselors, doctors and nurses. In late January we made plans to relocate to Philadelphia for Annalise’s delivery and surgeries. We’d need to be there for a month and made all necessary arrangements. I received a call from CHOP informing me we could no longer be their patient because they’re out of network. They suggested another hospital an hour and a half away from our home on Long Island. Devastated that we had to make a new plan so close to delivery I spent a week making phone calls. CHOP said they were the best. We asked to go closer to home prior to all of this. ‘Don’t you want the best care for your baby?’ Of course we did, so we decided travelling 275 miles round trip in winter conditions was what we would do and now we had to start all over. What we thought was a tragedy ended up being a blessing in disguise. We relocated to this Cohen’s Children’s Hospital where our family would be close, and good thing because we’d need them.
On February 13th, 2018 at 37 weeks gestation Annalise was delivered by c-section. We made the decision to take her earlier than 40 weeks to reduce the risk of further damaging her exposed nerves. Amniotic fluid is neurotoxic and the damage it causes cannot be reversed. My 5lb 11 oz baby was 17″ long and she was screaming! She was born at 11:10 a.m.
I wouldn’t be able to see or hold her until 9:00 pm that night. I told Mike I was going to ask the nurses to hold her every day until they said yes. As soon as I was wheeled into the NICU I asked if I could hold my baby. She said yes and placed her chest against mine and we cried. I’ve never experienced a true natural high before.
The following morning Annalise was to have her back closure surgery at just 24 hours old. We sweetly told her ‘see you later’ and waited anxiously for her to come out. She came through with flying colors and was laid on her belly for 2 days to heal.
On day three, things changed. In what has now been deemed the worst day of our lives, Annalise needed brain surgery to place a shunt in her head. The shunt was expected. What wasn’t expected was the way the doctors delivered this news. The ventricles in her brain were enlarging quickly and there could be damage. She had been moving her feet but now all movement had stopped. They needed to operate right away. They stood there at the end of my bed, a wall of white coats frankly explaining how my baby’s brain was being squished by fluid, unable to drain. My mind was in the NICU. I could see the clock ticking. Why are they still in here? Go operate on my baby! The more I panicked the less they said. None of the doctors stopped me as I sobbed uncontrollably, hanging from my husband’s now soaking wet t-shirt. None of them stopped me to say it wasn’t as bad as I was thinking. I expressed I was having a panic attack. I couldn’t breathe. One doctor said, ‘if you’re crying you’re breathing,’ and they exited the room. Our nurse called in more nurses. They held their hands over us and prayed. I’ll never forget those nurses. They continued to pray with us and for us during our stay. We hurried down to the NICU to see her before her surgery. Our family and my best friend rushed to the hospital to wait with us. Her surgery went well but she was having some trouble getting off the ventilator. It was so hard to see her on the vent. I asked her nurse if I could hold her. She was placed in my arms, breathing tube and all.
In the following days Annalise gained strength. She was now laying on her back and her feet would wiggle and twitch. I’d get excited for rounds so I could tell the doctors what great eye contact she was making. I wanted to tell them she smiled often and was moving her feet and eating so well! The excitement to see her doctors faded fast. They’d huddle next to me like I wasn’t there.
While holding Annalise one morning a woman came in swiftly wearing a leopard blouse and clicking her heels on the floor. She walked right over to me as I sat in a metal folding chair with my baby. I looked up at her and she said, ‘sorry for the bad news,’ and walked away. What bad news?! I wasn’t informed of any bad news. I started crying as she exited the NICU. Again the nurses comforted me. The bad news she was referring to was Annalise’s nose. Her nose was squished down nearly flat when she was born. I noticed it too but anyone who has seen a newborn knows their faces change by the minute from the squished ones fresh from birth. It bothered me for the first day but I saw it slowly coming into its destined shape. Without testing her, solely based on her nose at birth, they told us Annalise had ‘an unknown syndrome’ based on her facial features. This couldn’t be further from the truth. Her nose popped up perfectly by the time we went home.
After four days I was discharged and moved to the Ronald McDonald House next door to the hospital. The accommodations were amazing. This experience has taught me nothing is by chance. There is a reason for everything. Ronald McDonald house has amazing rooms each put together by a different interior designer with a different theme. Room assignment is random. I saw the rooms online and one stood out to me. It was a prism theme with a glitter ceiling. I’d pick that one if I could. As we approached our assigned room there was a plaque on the wall outside the door. On it was a quote from ‘Somewhere Over the Rainbow’ which played at my Poppy’s wake and at numerous important events for our family. Under the quote was the name of the family who donated the funds for that room. Our room was donated by the McAngel family. We knew my Poppy would get her through this.
Annalise graduated to the Step Down Unit of the NICU after 7 days. She was in an open-air bed and could wear clothes now! I didn’t have to ask to hold her. She was so much more ‘my’ baby than she had been. After only 9 days she was ready to go home.
The first months of Annalise’s life were pure joy mixed with some colic and a whole lot of fear. We had lots of appointments and left many of them feeling defeated due to the overall pessimistic attitude about Spina Bifida. Much of the information given to families is outdated and negative. Annalise has hypotonia which is low muscle tone. This makes everything she does, even with her functional upper body, more difficult. We felt it was unfair to put her on the same scales as children with average abilities where she would of course ‘score’ much lower. Some appointments gave us good news. Annalise had a test called a VCUG which takes x-rays of the bladder when it’s full and when emptying to make sure it’s working properly. She passed that test and we hope those results continue as she grows.
At two months old Annalise was evaluated for Early Intervention Services. She receives Physical Therapy, Occupational Therapy and a teacher. Annalise’s therapists are amazing. Our family would not be where we are today without these amazing women. When you have a baby that is differently-abled and you’re told they will have delays without exception, you watch for milestones to an obsessive degree. We’ve had to learn to let go of timelines. Yesterday was her first birthday and she is exceeding many of the limitations doctors put on her before she was even born. She’s small but mighty. She’s determined and sweet and if you ask anyone they will say she’s the best dressed baby they’ve ever seen.
While she still struggles to do things like sitting on her own and she has a charming little head tilt called a Torticollis, she pushes through. Her achievements so far are more than we could have ever dreamed as compared to the grim outlook her doctors gave us now more than a year ago.
A lot of what got me through the unknowns of Annalise’s future during my pregnancy were other moms of differently abled children. I’d look at accounts using different Spina Bifida hashtags and see amazing kids living fulfilling lives. I’ve found so much hope and support communicating with parents of kids who have a broad range of disabilities. I prefer not to use the term ‘disabled,’ though. Annalise and kids like her are ABLE. They do things their way and in their own time just like everyone else.
I’ve messaged many moms on Instagram thanking them for being so open and sharing their journeys because they’ve helped my husband and I so much. After sharing Annalise’s diagnosis with ‘the world,’ I’ve gotten so many messages thanking me for showing the sunny and positive side of Spina Bifida. What was once a daunting thought of sharing my child’s diagnosis is now one of the most rewarding parts of my life. Advocating and educating is so important for inclusion. That’s all Mike and I want for our daughter. We want her to know her worth and live in an inclusive world that loves and accepts her. We hope that by sharing her story we can help to influence society in this positive way. We’d love for you to follow Annalise’s journey and share your children with us too.”
This story was submitted to Love What Matters by Amanda Waligora of Long Island, New York.
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