Mighty Myles

May 2024 Update:

So much has happened in the past 9 months… too much to keep up with. It was decided to transfer Myles’ care from McMaster Children’s Hospital to The Hospital for Sick Children (SickKids) in Toronto in March of 2024.

Since then Myles has had an NG Tube inserted and has been undiagnosed from the Cows Milk Protein Allergy - he gets to have real dairy! However while we see some positives, there has also been some negatives.

As some of you may know, Myles was admitted to SickKids Hospital with a fever as of May 25th, 2024. Since then, his condition has not improved significantly and we will be remaining at SickKids for the foreseeable future.

Myles needs a liver transplant and unfortunately due to his inability to ingest an appropriate amount of calories, requires us to stay in Hospital to help him gain and maintain weight.

In addition to his NG Tube, in the coming days he will have a PICC line put in which will allow him to continue on TPN, Total Parenteral Nutrition. The good news about TPN is that it completely bypasses the stomach and the nutrients are put directly into the bloodstream. This will allow us to offer Myles some solids, which is something we previously were unable to do.

What brought Myles into the Hospital was a fever and a head cold. Since his body is working overtime due to his damaged liver, when he gets sick it hits him hard and takes him longer to recover. He has spiked multiple fevers since being admitted and is on IV antibiotics. We also have a suspicion of Cholangitis, a common infection that Biliary Atreisa babies get.

With Myles’ body being sick, it’s to our understanding that he won’t be listed for transplant until he has improved. Once officially listed, those who are interested in donating a piece of their liver can begin the evaluation process (one at a time) to see if a living donation is a possibility.

Our already hectic and stressful lives have just become more intense with us remaining in Toronto long term. We need all the support we can get and are so appreciative of those who have extended well wishes and support to our family.

November 2023 Update:

Our Mighty Myles is one tough little warrior. His Kasai Procedure took place on Oct 17th, and he did so well. After spending 3 days in the PICU, we then spent one week in the regular ward healing and adjusting to eating again. Myles was put on TPN which helped him receive all his nutrients directly into his bloodstream. This allowed us to slowly ease him back into drinking milk from a bottle.

We were discharged on Oct 27th but were quickly readmitted back into hospital on Oct 31st for 5 days due to a drop in weight and levels being slightly elevated. Myles has always struggled with weight gain since birth due to his BA so to help move him along, we started fortifying his milk to give him extra calories. He was also sent home with antibiotics that he continues to take as well as Ursodiol and DEKA Essential Vitamins.

Late on November 4th we took a trip to the ER after Myles spiked a fever. We were readmitted and put on IV Antibiotics in case of infection. It was also determined at this point that Myles has a Cow's Milk Protein Allergy after we noticed some blood in his stool and were switched to a special CMPA specific formula for him to drink. After being discharged, we returned to the ER on Nov 10th with more blood in his stool. He was then put on Iron as his haemoglobin was down and he had a GI bleed which is typical in babies with a Cow's Milk Protein Allergy.

Since then, Myles has gained weight, and his levels are slowly coming down. We continue to have frequent visits at the hospital for bloodwork, weight checks and meeting with specialists. We appreciate all support from loved ones and friends during this difficult time in our lives. Our mighty man continues to push on. While the risk is always there, we pray he will continue recovering nicely and won’t need a transplant in the future.

Learn about Biliary Atresia and the Biliary Atresia Registry here: https://cbar.ca/?fbclid=IwAR0lniEspK3v5EbXvutPnmWNmi2v-XRN8Hs47PDs5PRiIWBVk8nv5g8tHxs_aem_AeRjN9rnvhJxh5iBKmwa_koFIDjGDH89DphbwmcH30j3dbVe9g1lkTpEnjF6RWWSsgA

Our dear friends Emily and Cody gave birth to their little bundle of joy Myles on August 25th 2023.

They recently discovered that their little boy was born with a condition known as Biliary Atresia, a rare condition in which the bile ducts outside and inside the liver are scarred and blocked. They also found out that his gallbladder did not develop. Due to this recent diagnoses, they have now been admitted to McMaster Children's Hospital, and are anticipating the KASAI procedure.

Under these circumstances, neither are able to sustain employment. We are asking all to help cover cost of living for this family during this difficult time.

We thank you for donations in advance. Please keep Myles and his family in your thoughts. The family also wishes to have their privacy respected during this difficult time.