Three-year-old Eleanor was born with cleft lip and palate and has had two surgeries to repair it. We sat down with Eleanor’s mom, Elizabeth, to learn more about their family’s cleft journey at OHSU Doernbecher Children’s Hospital.
Can you walk us through Eleanor’s diagnosis and surgeries?
We found out that Eleanor most likely had a cleft at her anatomy scan when I was pregnant with her. I was at that appointment by myself and it was kind of overwhelming. Our office referred us over to a maternal fetal medicine clinic where we live in Eugene and they were able to confirm a diagnosis: Cleft palate in addition to cleft lip. Eleanor had what’s called unilateral complete cleft lip and palate, which is a structural defect that affects her lip, nose and maxilla (a bone that forms the upper jaw).
After that, we met with a genetic counselor, who reassured us that there’s nothing we could have done to prevent this with Eleanor. Cleft lip and palate doesn’t run in my family or my husband’s family, so Eleanor’s case was spontaneous, meaning it’s not genetic and they don’t know what causes it.
We were referred up to OHSU Doernbecher Children’s Hospital, where we met with Lisa Crupi. She and her team gave us an outline of what to expect. They also provided us with supplies and instructions to have on hand when she was born.
Eleanor was born on February 2, 2020, and she was in the hospital in Springfield, Oregon, for about five days, some of which were in the NICU. Thanks to some training, we learned how to feed her and were grateful for the supplies from the OHSU team – we used those right away.
Once Eleanor was home, my husband, Jacob, called the Doernbecher team and we met with them when she was just a week old. That first week was so hard – she wouldn’t stop crying and we couldn’t get the feeding quite right. Someone in an online support group had a similar experience and said to check for sores in her mouth, and that was exactly what was going on. At Doernbecher, they changed the bottle and told us how to help her sores heal. After that, it was pretty smooth sailing with feeding.
At that same appointment, we got the rundown on a procedure called the NAM (nasoalveolar molding), which uses an orthodontic device in a baby’s mouth to help shape and improve the position of their nose. We knew the device would need to be looked at and adjusted every week for several months, which would mean a big commitment for us with the drive to and from Portland. But the benefits could be great long term, so we decided to go for it.
Dr. Judah Garfinkle took a mold of Eleanor’s mouth, and we were set to go in and get the device a week or two later.
And then COVID-19 hit.
Because of the uncertainty around hospital restrictions, we wound up going another route. The cleft and craniofacial team sent us a package with supplies to tape Eleanor’s lip, which helped pull the skin together up until her first surgery.
Eleanor was 7 months old when she had her first surgery, which was a bit later than our initial timeline. It was a lip surgery with Dr. Lori Howell. One of the things I really appreciated about Doernbecher was that they had someone call and talk to us about some of the logistics surrounding surgery (e.g., where we were going to stay, what we needed to know about parking and food options).
It was pretty nerve wracking. I was nervous about not being able to feed her after midnight the night before her surgery, but she did great. She’s always surprising me like that! She was all smiles and chewing on her foot before they took her back.
After the surgery, I went back to see Eleanor. I felt like I was looking at a stranger – she didn’t look like my baby. It was such a weird feeling and I was pretty emotional. She had stitches, tape and glue on her face and plugs to hold her nose open. She was also really swollen for a couple of days, but once that went down, I looked at her and thought, “there she is!”
Her scar is shaped kind of like a lightning bolt, and it’s changed and loosened with time. People tell me constantly how good her lip looks and how impressed they are by it. Not everyone can tell that she had surgery, but if they know, they’re singing Dr. Howell’s praises!
Next up for Eleanor was her palate repair, which was also done by Dr. Howell. Eleanor had the surgery the day after her first birthday, and it was a harder surgery, recovery wise. We had to stay in the hospital for a few days until Eleanor was able to resume eating and drinking. I’d say her full recovery took around six to eight weeks.
Barring any complications, Eleanor won’t need another surgery in the near future. She will eventually need a bone graft, but not until she’s somewhere between 7 and 10 years old. It’s so nice to be in this era of downtime where we don’t have to worry about anything huge coming our way. And I’m so relieved that the next time she does need surgery, she’ll be able to tell me what’s wrong and describe any pain. With a baby, you’re just trying to guess, and that’s really difficult.
Eleanor is 3 now, and she’s a real girly girl. Her three favorite things are princesses, rainbows and unicorns, and she loves twirling in her dress-up dresses. She’s a little shy but once she gets to know someone, she won’t stop talking. She’s in a phase now where she loves to ask, “why?” over and over. Speech development can be complicated for lots of cleft kids, but so far she hasn’t had any big speech issues and we’ve had the standard follow-up appointments with speech language pathology.
Eleanor is our first child, and it’s been so interesting having this as my only parenting experience. Although her first years haven’t looked like a lot of other kids’ do, it’s just what we know. This is normal for us, and in a way it’s perhaps not as stressful as having something to compare it to.
What have you learned along the way that might be helpful for other families with kids who have cleft lip and palate?
Advocate for your child. After Eleanor’s palate repair surgery, she was in a lot of pain. We met with her care team to figure out a game plan, and were fortunate that the nursing staff also helped advocate to come up with a slightly different plan to manage her pain. That was key in getting Eleanor to eat and drink so we could head home.
Knowledge is power. The road maps we were given were so relieving, as was the confirmation that we didn’t do anything wrong that caused this for Eleanor. It might be hard to avoid the blame game, but know that it’s nobody’s fault. In fact, you could even look at it as being chosen to walk this path with your child. Everyone’s experience is different, of course, but that was a helpful reframe for me.