While in her third trimester during her second pregnancy, Brianna Passmore of Port Lavaca found out devastating news — her baby had a brain malformation that could be fatal for her child.
Berkley Passmore was diagnosed with semilobar holoprosencephaly while in the womb. Brianna, and husband John Passmore, were overwhelmed by the news about their second child.
“We did not find out anything was wrong until 31 weeks. We had an ultrasound every month from month one except in January,” Passmore said, but nothing seemed amiss with Berkley’s development until later.
What the Passmores learned about Berkley’s condition is that when her brain was developing between the third and 14th week of gestation, it did not completely separate into bilateral lobes.
Instead, the lobes merged together in the front creating an incomplete forebrain division, resulting in partial separation of the cerebral hemispheres, which also caused mid-facial deformities including cleft palate, cleft lip and a flattened nasal bridge.
Semilobar holoprosencephaly occurs in one in 10,000 live births.
“The facial deformities happen because your face is a replica of your brain when developing,” Brianna Passmore said. “We were devastated, scared and more so we didn’t understand why. it was the longest two months of our lives not knowing what to expect and every doctor telling us they wouldn’t know until she was born. The outcome didn’t look well.”
Berkley was born on April 2 in Houston, weighing 7 pounds, 2 ounces.
Now 1 month old, Berkley is a typical infant for the most part, according to Passmore.
“Berkley is doing well, much better then we or the doctors ever imagined. The doctors did not think she would make it past birth. She is gaining weight and growing taller,” she said. “She is such a blessing to us. Our family wouldn’t be the same without her.”
Passmore describes her daughter as a happy baby who looks around bright-eyed, who sleeps well, cries when hungry or needs to be changed and who loves her pacifier and bath time.
Berkley’s older sister, Brynn Passmore, is delighted to have a baby sister.
“Brynn loves her little sister,” Passmore said. “Every day, when she gets home from school, the first thing she asks is, ‘Where is Berkley and can I hold her?’ She always sings to her and gives her tons of hugs and kisses when playing around the house. She also is a huge help.”
Berkley’s prognosis is dependent upon the degree of fusion and malformation of her brain, as well as other health complications that may be present, Passmore said. it is a waiting game for the family.
“The doctors cannot tell us an exact time, but they told us many babies like this usually live only a few weeks,” she said. “As of right now we take it day by day spending as much time with her as possible as she has already proved them wrong for making it this far.”
What gets the family through the daily joys and worries are their many friends and relatives who have gone above and beyond to help them in any way that they can, Passmore said.
The family also took Berkley to Children’s Memorial Hermann Hospital in Houston for its many different programs and specialists whom they utilize to help the her parents better understand what they are facing.
“They were also a huge help when explaining to Brynn what was going on with Berkley,” she said.
Explanations of what could happen do not provide answers as to why this happened during Berkley’s development.
“We have had many tests including chromosome testing and genetic testing to find a reason, but no luck so far,” Passmore said. “This may just be a fluke, according to the doctors. but more testing is to come as Berkley gets older.”
Surgery is also in Berkley’s future.
One surgery will move her feeding tube from her mouth and nose into her stomach. She could have surgery for her cleft lip at 10 weeks once Berkley weighs 10 pounds. She can have surgery for her cleft palate at 1 year and surgery for her nasal bridge at 5 years.
“The only problem with all these surgeries is she will be put under (anesthesia) and we may not do them at the exact time the doctors want, due to it being more dangerous if she is smaller,” Passmore said.
“Also, if fixing her lip or palate will compromise her breathing in any way, we will not be doing either of those because her breathing is more important,” she said. “We will address each of those at the time and talk with the plastic surgeon team multiple times before going through with anything.”
If surgery equates to suffering for their child, the Passmores might pass on it.
“When it comes down to it, we may not do any because we don’t want her to suffer if she doesn’t need to,” Passmore said. “It really all depends on how Berkley is doing when each of those times come along.”
Brianna is a full-time college student in Victoria, while John is a lab technician in the technical lab at Formosa. The family has health insurance, but two benefits were held for Berkley in March to help raise funds for travel and medical expenses not covered by insurance.
“Those benefits raised a lot of money and we could not be more grateful for everyone that bought or sold tickets, donated money or items or came out to help make both benefits possible,” Passmore said. “We will not have to worry about money in the midst of everything right now because of them. We could not be more proud to be a part of a community that comes together the way everyone has done for our family. All the support and prayers are amazing.”
What the Passmore’s have is an abundance of hope for their daughter.
“Our hopes for Berkley are that she continues to grow big and strong, pain free and that she proves the doctors wrong,” Passmore said. “However, she still has a hard road ahead of her, with some surgeries and more testing. this diagnosis is the one time in life we hope the doctors are wrong in that she will be able to live a long, full healthy life.”
Anyone seeking to keep up with Berkley’s progress can visit http://www.caringbridge.org/visit/berkleypassmore/journal.
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