The administration of Windsor Hospital says the primary goal is to protect all children in the unit from germs and external diseases.

Olivia China Wallace and Bruce Gagnon, parents from Windsor Hospital, want their sick one-month-old daughter to be surrounded by her loved ones by her bedside. But the couple and Olivia Gagnon's family say this is not happening due to a policy – which they argue is very restrictive – at Windsor Hospital where she is now being cared for after being born in London.

Olivia's family said the neonatal intensive care unit (NICU) at Windsor Regional Hospital, which cares for children and those with severe illnesses, told them that only two primary caregivers can be with the newborn.

Olivia was born in September at the London Health Sciences Centre which only allows two people to visit the newborn. Her family learned that Olivia has trisomy 18, also known as Edwards syndrome, a serious genetic condition. There is an additional copy of chromosome 18 behind this condition, which can cause severe developmental delays, birth defects, and health problems that can affect almost every organ system in the body.

Most children die before or shortly after birth – about 50 percent of newborns live longer than six to nine days. Of those who survive the first thirty days, about 36 percent may be alive at one year. Olivia's family said every day is unknown. Georgette Gagnon said, "She is an amazing girl fighting all this long time... most children do not reach this point and she has been doing great." It is hard to know how long Olivia will live, but she is not considered palliative at this time.

Nevertheless, family members say it is unclear when they will get a home. With so many unknowns, Wallace, Wilson, and Gagnon want Olivia to be surrounded by her family as much as possible and to meet her half-sister, grandparents, aunts, and uncles.

The couple said that despite their pleas, the hospital will not allow them such visits. Shelley Wilson, Olivia's maternal grandmother, said, "It is really hard." "I live far away, but I can't even see my granddaughter. We don't know if she will grow and not wake up, we don't know if she will come here tomorrow or an hour from now – we don't know.

It seems inhumane and cruel." Olivia's paternal grandparents, Debbie and Mike Shidur, said the newborn is a "gift" every day. Mike said, "I just don't understand the difference between here and London." "The people who make these decisions, I mean it’s very easy to make the decision, take the safe route, but without considering the consequences for anyone else involved. There are humans involved here.

We are not talking about cars; we are talking about humans." Windsor Regional Hospital said these rules aim to protect vulnerable children in the NICU and these rules are not much different from what they were before COVID.

The hospital administration said exceptions to the visitor policy could be made, but this usually happens if the child is palliative or not functioning as expected. Karen Riedel, the hospital's chief nursing executive, said, "When we consider granting exceptions to the visitor policy, we have to look at the risks to those patients." "So in the neonatal intensive care unit, we have children who are at very high risk if exposed to infectious illness."

Riedel said it is flu season, along with the spread of respiratory syncytial virus (RSV) and COVID-19.

She said if any children contract these, it could be harmful. She said, as a result, the hospital management needs to reduce the number of people entering the neonatal intensive care unit, especially as the unit is open, meaning children do not have private rooms.

Riedel said that at this time they allowed 19 people into the unit. Allowing more visitors depends on the child's condition, but Riedel said supporting the child and bringing them home is their top priority.

While Wallace, Wilson, and Gagnon said they understand the risks associated with patient entry to the neonatal intensive care unit, Georgette Gagnon said, "We don’t want people to go up there and see her on her deathbed."

Wallace said, "We don’t want her to die for her family; she should be able to see her family while she is alive."

Wallace added that anyone in the unit can bring in the disease and that hospital management does not actively test them for COVID-19 before they go to the NICU. The family also spoke with a patient advocate through Windsor Regional Hospital administration, but they said the answer remains no.

"This is not only ridiculous for Olivia, but for any child with a fatal illness. There should be something that can happen, like having a room or something like that, or the child can be moved to [a room] and then visitors can come to see her – I don’t see how this is a big problem."

Gagnon said. Natalie Mehra, the executive director of the Ontario Health Alliance, which aims to improve the healthcare system, said she is "torn" in such a situation, given the stress hospitals face. Mehra said with the COVID-19 outbreak and staff shortages, it is reasonable for the hospital to scale back on welcoming more visitors, but it also needs to ensure that it is not unnecessarily restrictive.

Mehra said, "The worst thing that can happen is hospitals use restrictive visitor policies for convenience, because they don’t want to upset families." "Healthcare is about providing care to patients ... where policies have drifted to being very restrictive, neglecting compassion, and we have to resist that." This is what Olivia’s family says they will continue doing to ensure the newborn knows she is loved. Grandma Wilson said, "Every second is very precious." "She fights, this little girl fights hard."

Edited by: Yusra Bamtraf