Microcephaly and Encephalocele: Michelle’s Story

By Allyson Duran, mother of CHOC patient Michelle

When I was 21 weeks pregnant with our little girl, my fiancé and I received devastating news. Michelle’s head was not measuring large enough for how far along I was in my pregnancy. We were scared and didn’t know what this would mean for our little girl. My OB-GYN referred us to a high-risk maternal-fetal specialist, where we received a shocking diagnosis: our baby had microcephaly, a rare condition where a child’s brain does not fully develop, resulting in an abnormally small head size. They also diagnosed her with another condition called encephalocele, where brain tissue protrudes out to the skin from an abnormal opening in the skull. Although very rare – only 340 babies in the U.S. are born with this each year- this is one of the most common neural tube defects, a birth defect involving incomplete development of the brain and spinal cord.

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During the rest of my pregnancy it was a little emotional because we didn’t know if Michelle would survive the pregnancy or even worse, pass away shortly after birth. We didn’t know if she would come out breathing or what to expect. I had ultrasounds every week to monitor the growth of the encephalocele. When I was six months pregnant, my high-risk OB-GYN sent me to meet with Dr. Michael Muhonen, a pediatric neurosurgeon at CHOC. I didn’t know what to expect, but I couldn’t handle any more bad news. He told me the mass growing outside of her brain could either be tissue or fluid, but they wouldn’t be able to tell for sure until after she was born.

He told us that the prenatal ultrasounds showed a giant encephalocele with severe concerning brain anomalies. I was terrified about what was going to happen to my baby, but I felt reassured that she would be in good hands.

Michelle was born October 10, 2016 at 10:34 a.m. at University of California, Irvine. She thankfully came out breathing on her own, and my fiancé and I were an emotional wreck. I couldn’t hold her or kiss her right away because she was whisked away to the neonatal intensive care unit (NICU). Four long hours later, I was finally able to see her and give her a kiss, but I couldn’t hold her yet.

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Dr. Muhonen came to UCI to see Michelle and review her MRI so they could get a better idea of what was inside her encephalocele. While we waited for the results in the NICU, Michelle stopped breathing right in front of our eyes. The NICU nurses rushed to her aide and resuscitated her. She started breathing again on her own, but I can’t begin to describe how scary those two minutes were. My heart broke and fell into my stomach. At two days old, her condition was declining, but I knew in my heart that she was going to be ok.

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After that, a nurse approached us and handed us a little sack and said, “Someone who heard about your situation wanted to give this to you and remain anonymous.” As we opened the little sack we pulled out a key that said HOPE on it. I broke down in happy tears.

Michelle’s MRI results came back literally seconds later. Dr. Muhonen said that he had never seen an encephalocele this big before, but that it was mostly made up of brain fluid, and he was confident that he could successfully operate on her. Later that day, Michelle was transferred via ambulance to CHOC, where she would be prepped for surgery.

The next day, we put our three-day-old baby in the hands of Dr. Muhonen and prayed that her surgery would go well. Three hours later, he came out of the operating room to where we had been anxiously waiting in the lobby, and told us that the surgery gone well.

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“We were able to successfully put the exposed brain back into the skull and remove the outer sac of the encephalocele. The post-operative results were superb, and Michelle had no difficulties with the complicated surgery,” Dr. Muhonen told us.

Michelle stayed at CHOC in the NICU for three weeks to recover and get strong enough to finally go home. During that time, my fiancé and I stayed just down the street at Ronald McDonald House. When our baby was hospitalized, we were grateful to have an incredible team of nurses caring for her. This was my first baby and I had never been through anything like this before, and Michelle’s nurses were very patient with me and explained everything. They taught me things like how to feed her. They spent so much time with her and knew tiny little nuances about her. They were there to help and support not only their patient, but her parents as well.

Our favorite nurse, Maria, told me that one of her favorite parts of being a NICU nurse is empowering parents so that they can eventually play the role of their baby’s biggest advocate.

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Michelle’s favorite nurse, Maria, feeding her a bottle in the NICU.

For a while, we had weekly appointments with Dr. Muhonen to monitor the shunt (a device that relieves pressure on the brain) he implanted a few months after surgery. During surgery. Michelle was doing so well that our appointments were changed to once every three months!

Dr. Muhonen told us, “While Michelle is still growing, and has challenges ahead, I am optimistic that she will love and enjoy life, bring joy to her family, and will always be an inspiration to others.”

Today, Michelle is a happy baby. We are busy with physical therapy, occupational therapy, and infant stimulation appointments, but Michelle laughs and smiles all the time. She loves when people pretend to sneeze. She loves to jump. She is trying to walk, but she doesn’t like to crawl.

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Earlier this year, we participated in CHOC Walk in the Park in honor of our daughter, and to show our support for the wonderful neurosurgeon and all the other CHOC staff members who helped save her life! We are forever grateful and feel blessed for this wonderful hospital for keeping our family whole.

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Learn more about neurosurgery at CHOC

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CHOC Walk in the Park 2017: Why I Walk – Team Miranda

Seven years ago, Miranda woke up screaming in the middle of the night from unbearable head pain. She couldn’t move or recognize her parents, and then she collapsed.

Miranda’s parents rushed her, a 10-year-old at the time, to a local hospital. Physicians there initially told them to wait three days for observation.

Dr. Jason Knight, a CHOC Children’s pediatric critical care specialist and medical director of CHOC’s emergency transport services, was on call at that hospital that day, and met with Miranda’s parents, Regina and John.

An Emergency Transport to CHOC

“Dr. Knight explained what was happening better than anyone else at the hospital,” Regina remembers. “He suggested we transport her to CHOC so she could be seen by pediatric specialists. We were scared to move her, so we asked Dr. Knight if he would transport Miranda if she were his own daughter. He said yes, and we trusted him.”

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Dr. Jason Knight, critical care specialist, chair of the department of medicine, and medical director of emergency transport services at CHOC Children’s

Dr. Knight recalls, “As the physician covering the local hospital that day, it was my responsibility to assure that Miranda received the appropriate care in a timely manner. As soon as I assessed her condition and reviewed the CT scan of her brain, it was clear to me that Miranda needed to be transferred to CHOC immediately. I contacted Dr. Michael Muhonen, a pediatric neurosurgeon at CHOC, and coordinated Miranda’s transfer to CHOC.”

Scans revealed she had an arteriovenous malformation (AVM), a tangle of weakened blood vessels that had ruptured and started to bleed in her brain. Upon arrival at CHOC, Miranda immediately underwent neurosurgery with Dr. Muhonen, medical director of the neuroscience institute at CHOC.

“Miranda was critically ill upon arrival to CHOC. She reminded me of my own three daughters― innocent, beautiful and vulnerable. It was with this in mind that I approached her operation― do what it takes to keep her brain alive and functional,” recalled Dr. Muhonen.

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Dr. Michael Muhonen, medical director of the neuroscience institute and director of neurosurgery at CHOC Children’s

After a successful four-hour surgery, Miranda was placed in a medically-induced coma for several days. Her parents didn’t know if she would survive.

“When Miranda was in a coma, I told Dr. Knight that I wanted to take a photo of her so that I could show her when she woke up, but that I didn’t want to take it if she wasn’t going to make it,” recalls Regina. “For a few days, he wouldn’t let me take the photo because he wasn’t sure if Miranda was going to survive. Then one day, Dr. Knight told me it was ok to take a photo of her, and I knew that meant she was going to make it.”

John adds, “My family is intact today because of wonderful doctors like Dr. Knight, Dr. Muhonen and their teams. It’s just amazing what CHOC does. We are so blessed.”

The Long Road to Recovery

Miranda’s recovery process included child life specialists, physical therapy and rehabilitation. She spent one month at an inpatient rehabilitation facility followed by an additional three months of outpatient care learning how to walk and talk again.

The first year after surgery was critical. Miranda saw Dr. Muhonen every few months for checkups to monitor her brain, as well as a CHOC ophthalmologist to make sure her sight was progressing.

“The AVM and the clot were removed successfully, and Miranda has recovered with minimal long-term deficit,” says Dr. Muhonen. “My reward is not only seeing a disease-free brain on the post-operative MRI, it is the omnipresent smile and effervescent personality that Miranda still has, despite her near-death experience.”

Everything came back except her sight. She lost 25 percent of her vision in both eyes, but that hasn’t stopped her from dancing, her favorite activity since age 8. Miranda’s parents had to supervise her at all times for the first year after surgery to make sure she didn’t have a seizure (a possible side effect of brain surgery), which meant that her mom went to every dance practice and every pool party to ensure her daughter’s continued safe healing.

Giving Back to CHOC

A few months after Miranda’s surgery, her family was invited to participate in CHOC Walk in the Park by friends.

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Miranda and her family at their first CHOC Walk in the Park, just a few months after her emergency neurosurgery

“After what we went through, we felt closely tied to CHOC. We walked that year and fell in love with the event. We realized this was an affordable way to give back to CHOC,” recalls John. “My favorite memory was our very first CHOC Walk. Miranda walked alongside us, which was a huge accomplishment. A couple months before that, we weren’t sure if she was ever going to walk again. To see her walk on her own was the most memorable moment for me.”

The family’s first CHOC Walk was especially impactful for Miranda herself.

“I will never forget attending my first CHOC Walk one year after my surgery. I remember seeing other patients participating in the walk with their own team just like me, only they needed walkers or wheelchairs to have the capability of walking the entire distance. Seeing other patients that were struggling to do the simple task of walking, something that people take for granted, made me reflect back to being a patient at CHOC, where I once struggled with relearning how to walk during physical therapy,” recalls Miranda. “From that moment on, I promised myself I would always participate in the CHOC Walk and give back as much as I could, not only to represent the patients who couldn’t recover as fast as I did, but also for the patients that don’t make it. I am reminded every day by the scar on the back of my head of how blessed I am to have been a patient at CHOC.”

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Every year since her emergency surgery, Miranda’s family rallies dozens of friends to participate in CHOC Walk in the Park.

Every year since then, Miranda’s parents gather dozens of friends, family and co-workers to join Team Miranda, the CHOC Walk team they formed in honor of their daughter. They formed their team with the help of the Littlest Angel Guild, a philanthropic group that raises funds to support the mission of CHOC.

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Miranda and her family at the 2012 CHOC Walk in the Park

“We encourage people we meet to participate in CHOC Walk to help provide the best medical care for the children in our community. You never know if or when CHOC’s services will be needed for your children, for your friend’s children, for your neighbor’s children, or even a stranger,” says John, whose employer, Hill Brothers Chemical Company also sponsors CHOC Walk, in addition to the other philanthropic events benefiting CHOC. “We learned firsthand how much everyone at CHOC cares – the doctors, the nurses, the administrators, and staff throughout CHOC all genuinely care about the children and their families.”

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Team Miranda at the 2013 CHOC Walk in the Park

Experience at CHOC Inspires Future Career

Now a senior in high school, Miranda is preparing for graduation and heading off to college. Inspired by her experiences at CHOC, she is planning to major in psychiatry and dreams of becoming a pediatric optometrist.

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