Olivia's Laryngeal Cleft Story

Massachusetts, USA  |  May 2025

By Melissa Alves

Olivia was born a healthy (or so we thought) baby weighing 9 pounds 3 ounces. At two weeks old, we brought her to the pediatrician regarding possible acid reflux or a potential laryngeal cleft like her sister. The pediatrician told us to thicken her formula with rice and switch to a sensitive brand of formula. Olivia did great with these changes and for three months she was gaining weight and thriving. Then in July 2024, she completely stopped eating. 

We brought Olivia back to the pediatrician. The doctor recommended an X-ray which showed her bowels were backed up. We worked on the problem and fixed it, but she still wasn’t eating.  I knew something was wrong but didn’t know what. Olivia ended up inpatient for a week and a NG tube was placed. 

I was a mess. We had dealt with all of this with Olivia’s older sister. My older child ended up with a G-tube because the NG tube didn’t work out for her. We came home after Olivia’s July hospitalization, and everything was ok. Olivia was taking half bottles and half NG feeds. 

On August 14th we had the scare of our lives. I was getting my baby ready for a bath. Olivia was laying on our bed in just a diaper when I noticed my comforter was soaking wet. I picked her up and she was limp, sweaty and unresponsive.  We immediately called 911. Olivia was transferred from our local hospital to a children’s hospital 45 minutes away. 

We were all under the impression Olivia had had a seizure as my 3-year-old has silent seizures. Doctors ordered an EEG. Her heart rate and oxygen were also being monitored. Her heart rate started to rise over 200 so the doctors checked the EEG, but they did not see anything unusual. Olivia began to sweat again so they did an EKG which did not show anything. Next, they checked her blood sugar, which at 26, was very low. No one knew the reason her blood sugar was so low. 

Olivia spent another week inpatient and was sent home with a Dexcom, glucose gel, and glucagon. We did not have any answers as to why she was hypoglycemic. Critical labs were needed to answer this question.

On Aug. 23, 2024, we had to call 911 twice in one day. The second time she was rushed to the children’s hospital from our local hospital. While transporting Olivia to the children’s hospital, the D10 IV wasn’t working. Paramedics almost called MedFlight because she was dropping quickly but Olivia made it to the children’s hospital by ambulance.  Her sugar was only 23. The providers managed to  get critical labs done on Aug. 24 and that’s when we found out she had congenital hyperinsulinism (CHI). For some odd reason, and her team still doesn’t understand why, the rice cereal used to thicken her bottles was keeping her sugars in a more normal range. When Olivia got the NG placed and there was no more rice cereal involved, that’s when we started to see her sugars drop. 

The diazoxide had worked really well for Olivia, but once again, she was off her NG tube for a few days. On December 1, 2024, she decided she would stop taking bottles and did not want her medication. Her sugars were beginning to drop extremely low again, so she was admitted to the hospital. Olivia’s nasal passages are crooked and after many tries, a NG tube finally got placed in her right nostril where it stayed for four months. 

(Two days later) On December 3, 2024, Olivia had a triple scope and sure enough she has a type 1 laryngeal cleft with tracheal edema and cobblestoning. The ENT said he would like to repair her laryngeal cleft in the spring after the cold and flu season is over.

The ENT was able to dilate her left nasal passage, but since it’s so narrow and crooked, it won’t help much. Feeding my daughter through a tube will be long term and because of her conditions, we decided to have a G-tube placed in January 2025. Olivia was admitted the night before surgery for a 24-hour dose of D10 through her IV and remained hospitalized for 2-3 days after surgery because of her sugars. 

My husband and I did genetic testing with our first child, but the tests did not provide us with answers. We are now waiting to meet with genetics for Olivia. 

Olivia is now on diazoxide, and it’s been such a life saver. Her sugars still go up very high but do not drop below 70 anymore. Olivia's pediatrician said in all the years he’s worked in pediatrics that she is his second case with CHI. The other little one is also a girl.

Our journey has been a rough ride, but we are learning more and more every day. It’s becoming a little easier to handle. We know when she begins to have lows, we need to increase her medication dosage a bit and it helps her. We know her medication causes excessive hair growth, and we’ve come to terms with it because the medicine is saving our girl's life! Our journey may be a long one and may not ever be over. I’ve found so many parents that share similar journeys, and it makes it a little easier knowing we are not alone.