Our journey as a family was like any other with the news of my pregnancy. However, I was a college athlete at the age of 18 finding out about my pregnancy. My family and I believe that this was a blessing from God in my life. I went to every prenatal appointment with my local OB/GYN with no concerns of health issues for either of us, until almost halfway through my pregnancy. Due to family history of ADHD and autism, I received a referral for UC Davis in Sacramento, California. I still can remember that day as if it happened yesterday.
The diagnosis: spina bifida and hydrocephalus
The date was April 4th, 2019 when we went to meet with the UC Davis team to discuss the referral provided by my maternity clinic, and they wanted to perform a routine ultrasound. I had my mother alongside me through the day and it all started out happy, with us guessing the gender of Zayne with the ultrasound tech performing the scan. I remember looking at the tech when she asked for us to not look at the screen and her face showed concern. My mother, being a nurse, had a feeling something was wrong by the way the tech turned the screen from us. After the scan was complete she informed us that the doctor would be coming in to speak with us shortly.
The tech and Dr. McLennan came into our room to speak with us about the results. She was very kind, but with sadness, told us the news about Zayne. He was diagnosed with Spina Bifida and Hydrocephalus. As a young mom, I had never heard of either of these. My mother screamed as she went out of the room, knowing the outcome for most of her patients with this diagnosis.
The decision: a path to fetal surgery
I honestly did not know how to comprehend all this information. We sat with Dr. McLennan as she discussed our options with us — to continue with the pregnancy to full-term so they can perform surgery on Zayne after birth, for the fetal care team to meet with us to discuss possible fetal surgery while pregnant, or to terminate the pregnancy.
After that discussion, she sent our information over to the fetal care team as we waited for the phone call to come later that week. My mother and I had a two-and-a-half-hour drive back home to our family to tell them the news. I remember crying the whole drive, blaming myself for what happened as any mother would do, and calling all my family members that were contacting us. When we returned home, we had family and friends, as well as my mother’s coworkers, embracing us with so much support and love. As a family, we prayed and discussed the options on what would be best for my son in this world. We all came to agreement that if the fetal care team would approve us for the fetal surgery, that we would move forward with it.
A week or so later, I met with Dr. Hirose and Nurse Amy to discuss our MRI fetal results to see the best option for us. Zayne had myelomeningocele, which was a type of Spina Bifida that causes an opening in the spine, creating a sack filled with fluid. In Zayne’s case, the opening was mainly located on his S2, which also affects his bladder and bowel function. During the scan, Dr. Hirose was concerned for how severe his case was involving the hydrocephalus, as well. This extra fluid in the brain prevents normal drainage of the cerebrospinal fluid (CSF), which is the clear, colorless fluid that protects and cushions your brain and spine.
After receiving all this information from Hirose, I looked at my mother and we agreed to push forward for the fetal surgery if the fetal care team approved our case. During this time, I was still a college student balancing all this information. I received a phone call in the middle of a lecture from the UC Davis Fetal Treatment Center. Their main concern was for my age due to just turning nineteen at the time. They feared that I would not be able to have any more children after this surgery was performed due to how high risk it is and complications that can arise. I considered their concerns, but I wanted what was best for my child, which meant making sacrifices to give him a better chance at life.
The surgery: success & risks
Our surgery was scheduled for May 8th, 2019, to be the first case of the day. I had been getting prepped while I had my parents by my side watching and listening to them discuss the plan for this surgery. We met with Dr. Hirose and his colleagues that morning for one last confirmation to continue forward before being taken back to the OR. My parents walked with me as far as they could go and I remember telling them, “If I am meant to be a mother, God will protect me. If it is my time, please take care of Zayne.”
My mother cried telling me everything will be okay. After just four hours, they woke me up telling me that the surgery was a success and that we were stable. At the time this surgery was performed, I was just 25 weeks pregnant, which meant I had to be on bed rest for the duration of my pregnancy. I was discharged a few days later into UC Davis housing for close monitoring until my check-up ultrasound with Dr. McLennan. We were informed that we were going to be admitted back into the hospital due to my cervix thinning and needing extra close monitoring there. Once we were admitted back into the hospital, my water broke at 26 weeks and 3 days. They informed me that sometimes mothers can carry the baby for a little while longer with a small leak, but as a risk from fetal surgery, you can go into premature labor.
The delivery: emergency C-section
At 3am, my nurses woke me up to rotate me due to Zayne not being on the monitor. Feeling anxious, I called my father to join me in my hospital room to make sure everything was okay since I was unable to see the monitor. At 5:30am, contractions had started and were within minutes of each other — I was screaming in pain. My father ran out the room to get help when the doctors that were on for the night called for an emergency C-section. I was so terrified knowing that I could not have a vaginal birth and feeling my body pushing as I was rushed to the OR. Zayne was delivered at 5:45am on May 19, 2019. I never got to hold him, but was awakened by my mother crying over me in the recovery room.
A second diagnosis: diaphragmatic hernia
Zayne was taken to the NICU and I was later taken back to my room when I was stable. The Nurse Practitioner from the NICU came down to give us an update on Zayne, where we learned that he had a diaphragmatic hernia that they did not see in his fetal scans. After hearing this news, they estimated his NICU stay all the way to December of 2019. As a family, we knew that this was part of our journey to have Zayne.
Zayne was stable for the first week of life until they performed a scan showing that his intestines were crushing his left lung, that was also affecting his heart. They performed this surgery on June 6, 2019, and it was the hardest day of my life. I had my brother’s graduation that day and had no family there to support me with this surgery. After hours of waiting for news on Zayne, Dr. Hirose came out with the news that his liver was nicked during surgery and that I had 24 hours with him to see if he would make it. I cried and prayed by his bedside, holding his tiny hand saying the prayer to God, “God if I am meant to be a mother, give him strength. If this is your will to protect him from further pain, please watch over him for me.”
To everyone’s surprise Zayne powered through and was discharged in August of 2019. He was such a fighter during his stay in the NICU and touched the lives of many, but especially the people that cared for him; RN BSN Wendy, RN BSN Amanda, RN BSN Crystal, RN BSN Kaela, Dr. Noelle, Dr. Hirose, and main fellows that were a part of this research case.
We thought our journey of climbing the mountain was nearly over, when Zayne started having absence seizures in October 2019. This was due to the pressure caused by his hydrocephalus. His neurosurgeon, Doctor Zweinenburg, met with us to discuss his options after his scan was performed in December.
A second surgery: heading toward healing
On January 13, 2020, she performed a surgery called a ventriculostomy, where an external ventricular drain was placed to relieve the fluid pressure on the brain and help a natural flow and healing. During this stay, Zayne experienced a grand mal seizure, which led to him going into respiratory distress after thirteen minutes and a code was called.
Thankfully, Zayne recovered from this event after his electrolytes were corrected. He left UC Davis with the biggest smile on his face and that was his last surgery before his first birthday. Zayne has been a strong kid with the perseverance in life to keep going. We as a family have never let his disability affect him. He had his delays, as most kids would after all he has gone through, but he is now coming up on his fourth birthday. Zayne has accomplished so many things on his own, from learning to crawl, to walking with his walker, to now walking independently. He loves to speak, color, hunt, and be with his family.
We have never treated Zayne any different than a typical kid. He recently gained a new title of big brother! In September 2022, his sister was born to this world by the same doctors that cared for him. He loves his sister so much and this could not have been possible for all of us as a family if it wasn’t for the incredible UC Davis Fetal Care Team.
