Help Baby Ian Dobbyn and His Parents

A parent's worst nightmare is having anything terrible happen to their children. When you are pregnant, the most important thing you focus on is delivering a healthy baby. For those who deliver a baby to find out something is wrong with their health, the news is shocking. For those who find out their baby is born with a terminal illness, it is devastating.

My friends Huamei and Sean welcomed their first baby on June 30, 2022, a boy who they named Ian. After a smooth pregnancy, he was born unresponsive and required immediate intubation and resuscitation and was then taken to the NICU (Neonatal Intensive Care Unit).

In the NICU, he was placed on a therapeutic cooling protocol to protect his brain function due to suspected oxygen deprivation. Other issues became apparent such as seizures, poor muscle tone, little observed alertness, abnormal suck/swallow and he developed a stridor (high pitch sound while inhaling). He remained on a ventilator for 2 weeks after birth before being placed on CPAP support. His mom didn’t even get to hold him until July 11th, and skin to skin was nearly impossible with all the tubes and wires connected to him.

On July 7th, he was transferred from Royal Columbian Hospital to BC Children’s Hospital NICU for more specialized care and to undergo a Bronchoscopy (procedure to observe the inner condition of the larynx and lower airway). Nothing significant was found to explain his respiratory issues so Ian was transferred back to RCH on July 16th where he remained in the NICU until August 28th. While he was there, he had two MRI’s, which indicated brain damage had been sustained, but not yet sufficient to explain his condition and clinical presentation.

Ian’s condition stabilized enough for him to be transferred back to BC Children’s Ladybug Unit to prepare for a complex discharge. It was generally understood at this point that Ian had significant issues that could potentially heal over time. Huamei and Sean were not given a specific diagnosis or prognosis. While they prepared for difficult conditions at home, they had hope that he may be delayed in his development but would eventually catch up.

However, once at BC Children’s, concerns of possible seizures returned and neurology put him back on medications to control them. They ordered numerous tests and put him on a waitlist for a third MRI.

Up to this point, Ian was feeding exclusively through either an OG or NG tube as he was not able to coordinate sucking, breathing and swallowing well enough to breast or bottle feed. On Sept 16th Ian had G-tube surgery for long-term feeding.

The Ear Nose and Throat follow up on September 30th discovered vocal cord paralysis to be the cause of Ian’s stridor. His vocal cords would not open fully when he inhales.

The third MRI was done on September 19th and this is where their world fell apart.

Results found abnormal development of white matter in Ian’s brain compared to earlier MRIs. The diagnosis was Leukodystrophy, a rare genetic and degenerative brain disease. There are many different subtypes of the disease which can cause problems with movement, speech, vision, hearing and mental and physical development.

It is progressive and terminal.

Metabolic Diseases was consulted on September 20th to help narrow down the diagnosis and a referral was made to Canuck Place Children’s Hospice, where Sean and Huamei met numerous doctors and learned about the facility.

It is unclear how long Ian’s life will be, but it is generally understood that the earlier in a child's life that Leukodystrophy appears, the shorter the lifespan tends to be.

Ian is a peaceful and sweet little boy who loves to meet new people. He really enjoys the water at bath time and is a curious soul.

Ian was discharged from BC Children’s Hospital on October 23rd. Combined with a short stay at Canuck Place until the 27th, it had been nearly four months since Ian’s birth. The family is now at home, navigating Ian’s care without qualifying for at-home nursing support. They have found the overall medical system and safety net very complicated and hard to navigate, especially amongst the stress and grief of their situation. In addition to all of the usual care that babies require, his parents need to feed Ian 5 times a day via his G-tube as well as administer his medications three times a day. Ian’s continued care will include frequent specialist appointments.

Sean and Huamei have been relying on income from EI to get by, but the Family Caregiver Benefit is running out, which will force Sean to go back to work before they feel Huamei will be able to handle it on her own. Not knowing how long they have with their son before this disease takes him from them has been a very difficult thing to comprehend and they just want Ian to know how much he is loved while he is still here.

I started this Go Fund Me to help Sean spend a little more time with his son before returning to work and to ease their financial burden.