Just weeks after the state of Washington went under shelter-in-place guidelines, Jenalysse Renaud gave birth to two beautiful babies on April 17, 2020. Renaud and Donovan Allen, the twins’ musician father, named them Melody and Lyric.
Melody, a whole two minutes older than her little brother, faces a few challenges. Her left eye is smaller than her right and is being monitored for potential blindness. In addition, she likely has hearing loss or deafness in one ear, all features of hemifacial microsomia. After several tests, she was also diagnosed with malrotation— an abnormality in which the intestine does not form in the correct way in the abdomen—at just a month old. Thankfully, she shouldn’t face any prolonged consequences from that diagnosis after undergoing corrective surgery in May.
Renaud herself was born with hemifacial microsomia, the same condition Melody now faces. Craniofacial microsomia, also known as hemifacial microsomia, is a congenital condition in which the tissues on one side of the face are underdeveloped—as well as some hearing loss. Renaud was also born with a solitary left kidney.
“My hearing loss is bilateral and fluctuates, although my left ear has always been stronger than my right,” Renaud said. “During my anatomy scan while I was pregnant, I was most concerned that both of my children had two kidneys because they found that my solitary kidney was linked to my hemifacial microsomia.”
Both Melody and Lyric were born with two kidneys which was a huge relief for Renaud and Allen.
“I have remained healthy through the care of my amazing mother, doctors and monitoring my own kidney health,” Renaud said.
All in the Family
Dr. Michael Cunningham, chief of the Division of Craniofacial Medicine and medical director of Seattle Children’s Craniofacial Center, was Renaud’s doctor 26 years ago as a newborn. The bone structure of her face was not completely symmetrical and she had ear tags—benign growths just in front of her ears—so she was referred to Seattle Children’s Craniofacial Center.
“I was very young when I began seeing him and saw him up until my teenage years. One of my youngest memories is actually telling Cunningham that I wanted to be a doctor like him when I grew up,” Renaud said.
After completing treatment at Seattle Children’s and switching care as a teenager, she and Cunningham lost contact for a few years. Then in 2015, Renaud began working at UW Neighborhood Kent-Des Moines Clinic for a pediatrician named Dr. Matthew Blessing. Two of the patients on Blessing’s patient panel had craniofacial diagnoses and Blessing and Renaud soon became part of a care team that included Cunningham.
“Dr. Cunningham immediately recognized my name and asked how I was. I was shocked that he was still practicing almost 30 years later and relieved to tell my patients’ families that I knew him personally,” Renaud said. “We continued to cross paths over the years as I was beginning my career in medicine. It has always been a joy to say that he was my doctor growing up and to know that my patients were in great hands.”
When Melody was born in April, Renaud knew that she needed to be seen by craniofacial specialist. The family was originally referred to Blessing, now a member of Seattle Children’s Craniofacial team.
“After the referral was placed, I received a call from Dr. Blessing letting me know that the referral had been received but he wanted Melody’s primary provider to be Dr. Cunningham, because he knew me as a baby and felt that he would have more insight on Melody because he knew my history,” Renaud said.
Melody’s first appointments—both telemedicine and in-person
Melody was only 7 days old during her first telemedicine appoint via Zoom with Cunningham.
After, she had all of her nutrition appointments by phone. The nutritionists would consult with other specialists on Melody’s care team and then review her chart before calling Renaud to walk her through feeding Melody. Renaud knew Melody was too little to have her weight fluctuating and even identified the malrotation after one of Melody’s tests.
“The radiologist was like, do you work in medicine? And I was like, yes! I know what this is,” she said.
The diagnosis came through in the afternoon and Dr. Kelly Evans, a member of the Seattle Children’s craniofacial team, stayed by Renaud’s side until well into the evening.
“I was like, ‘You can go home! Don’t you have a family?’ But she wanted to stay to make sure everything went as best as possible. Dr. Evans was absolutely amazing and advocated so much for Melody and our family especially with Lyric being a newborn at home during this time. She refused to discharge Melody until her symptoms resolved or a definitive answer was found. Our family has felt surrounded by support through every stage of this process,” Renaud said.
In addition to her surgery, Melody also had in-person appointments with Occupational Therapy and Ophthalmology. By getting treatment early on from a robust multidisciplinary craniofacial team, Melody is now blossoming alongside her brother.
Telemedicine and the Craniofacial team’s compassionate care
Melody’s family was lucky to have Seattle Children’s practically in their own backyard but that’s not always the case for kids that have complex craniofacial needs. The Craniofacial Center draws many patients from out of the region. Christine Thai, a program coordinator for the Craniofacial Center, relishes the opportunity to connect concerned families with the care team. She connects patients from all over the globe to Seattle Children’s craniofacial experts.
Compassionate care is more than just pleasant bedside manner. For families that have children with complex craniofacial needs, just receiving an email from a healthcare professional can lift an immense burden. Part of Thai’s role is acting as the point of contact for out-of-region patients. Seattle Children’s offers dedicated support for families who live outside the Northwest. If a family lives outside of Alaska, Idaho, Montana, or Washington, they can contact Thai to learn more about the services Seattle Children’s Craniofacial Center can offer their child.
“I received one email from a woman in India asking if I could please help her family get in contact with Seattle Children’s team,” Thai said.
The woman was at an internet café so Thai had to be innovative. She got Cunningham to download WhatsApp so he and his team could more easily communicate with this woman and her family.
“Sometimes it’s a shot in the dark for these families,” Thai said. “Just having someone contact them is huge and I don’t stop there either. I keep up; I check in. I build a relationship with these families.”
Thai can then request medical records, any scans and photos of the child’s face and skull. From there, the Craniofacial team reviews each child’s case during their weekly meeting and then decides how to move forward with what is best for the family. Telemedicine has allowed families from all over the globe access to the same care that those have in the Pacific Northwest.
“We need to be flexible for these families,” Thai said. “It’s not easy during the pandemic but we’re making it happen.”
What’s next for Melody
The myriad ways craniofacial microsomia can progress make it difficult to guess what might happen next, but with access to telehealth appointments, Melody’s care team can regularly check in on her and address any changes in her condition as she gets older.
How it will affect Melody in the future all depends on how quickly she grows, whether or not her jaw stays symmetrical, and if her nerves stay working how they should.
She currently has a conformer—a clear plastic stint that helps the eye socket develop—in her left eye and will continue to be assessed for her vision to determine whether that conformer should remain clear or become painted to match her right eye.
Her ear tags will be removed when she is a little older. Later this month, she is having her hearing monitored with a brainstem auditory evoked response (BAER ) test which helps diagnose hearing loss and nervous system disorders.
“I will continue to love her, hug her, sing to her, play with her and pray for her,” Renaud said. “My medical issues are chronic but do not affect me on a daily basis. I have learned to love myself and will teach both of my kids to do the same.”
Renaud says Melody and Lyric love each other very much. Lyric pulls on Melody’s hair—she has a lot—and Melody playfully swipes at Lyric’s face. She says it hilarious to watch them interact and it completely fills her with joy.
“Oftentimes, I find one of them asleep and the other one awake and just staring at their sibling,” she said. “Melody definitely notices when Lyric is not around and she will be extremely fussy and constantly scanning the room trying to locate him.”
Another constant in Melody’s early months, is the presence of her Seattle Children’s care team. Since birth they have consulted on her, called Renaud to check on her and reached out to advise the family of next steps and to make sure that they are comfortable with her care.
“I knew that Seattle Children’s is the best place for Melody because it was the best place for me,” Renaud said. “I am proud to say that my daughter is taken care of by the same great team that I was. When I finally finish my degree to be a pediatrician, a large part of my motivation comes through the care that my family has received from Seattle Children’s.”