Baby Madilynn Medical Fund

Baby Madilynns parents have both dedicated their lives to helping others, her mother is a Weber County 911 Dispatcher and her father is a Police Officer in the Weber County area.

In the next 12-18 months Madilynn is going to require around the clock care and the medical bills are going to stack up. Let’s help this incredible family as much as possible so they can focus on what is most important!

Below is a summary, written by her mother, of what this baby girl and her family have been through the last few weeks.

We took our little five-month-old Madilynn to Primary Children's Hospital on December 23rd after some odd and noisy breathing. After several scopes and tests it was determined that she has a Subglottic Hemangioma. This is a large mass of blood vessels in the airway. She has not left the hospital since. 

While typically benign, it has nearly cutoff her entire airway. This resulted in the intubation and sedation of Madilynn for 11 days. This also included the use of a paralytic drug due to her airway being so critical.

She had a nurse assigned to her 24/7 to make sure she wasn’t moving even a little bit if she tried to fight through the sedation. She has had a great team working to solve this rare and complicated problem given the type, location, and size of the growth coupled with the fact that it contains a likely heavy blood supply. 

The plan of care requires Madilynn to be given strong doses of a medication called Propanolol, in hopes that the mass shrinks. First attempts to shrink the growth medicinally were negated by lowering Madilynn’s heart rate. The medication was stopped so that she could recover, at which point the medication was restarted at a much lower dose. 

A scope of the airway was eventually done and we were excited to see that progress had been made and the mass was shrinking. It was determined that we would re-intubate, sedate and paralyze her and scope again several days later.

Doctors and respiratory therapists had high hopes that she would be able to be taken off the ventilator and start breathing effectively on her own on January 3rd. While Madilynn was in the operating room, her doctors came and found us. They reported that the mass had unfortunately not shrunk enough to safely extubate her and that the safest option at this point would be to place a tracheostomy. We did not want Madilynn in what was basically a medically induced coma for any longer so decision to place the trach was quick and easy. We just want whatever it is that keeps our baby safe and gets her back home to a normal life. The trach was placed.

Today is January 10th and marks day 18 of being hospitalized. We have not left Primary Children’s other than for sleep in salt lake and dinner.

We are currently working on a ween of her medications. She had very high doses of morphine and anti anxiety medications that she needs to taper off of slowly and safely. We witnessed Madilynn go through some very very intense withdrawals while they were working on the right way to ween her.

We have attended classes to learn how to care for her tracheostomy for when we get to go home. We are scared but trying to be as confident as possible when caring for her. She will also be going home with a feeding tube while she adjusts to eating orally again. This will require lots of care from us. She needs fairly consistent suctioning of her trach throughout the day and night. She needs to have constant humidity going to her trach. She requires cleaning on her stoma at least twice a day or as needed as well as changing her ties that hold the trach in her airway. She will need a change of trach every couple weeks or as needed. We will have a medical supply company bringing us supplies for the foreseeable future.

Luckily we know the mass is shrinking. They anticipate the tracheostomy being semi temporary, potentially 12-18 months. During that time we plan to give her the best care we can and make the best of our new “normal”. This will be a lot of work and effort on our parts but what matters is that our baby is alive and otherwise well. Not every baby gets to go home after their hospital stay so we are thankful and grateful for being so fortunate.