Louisa McCance: Born with PH
Our sweet, beautiful daughter Louisa was born in August of 2021. Although Louisa’s Down syndrome and congenital heart disease diagnoses were known far in advance and not a surprise, her pulmonary hypertension was somewhat unexpected and has been quite a roller coaster. Over time, we have become used to her 24/7 oxygen needs and materials– although they have certainly presented new challenges as she has started to roll and become mobile! We feel so grateful to have an oxygen concentrator at home; even though the tubes and stickers are an inconvenience, we have seen huge progress in her growth and milestones thanks to her access to oxygen. It is particularly helpful because we live at altitude (6200 ft.) and it will be a long, slow process to wean her off her oxygen.
Managing her many follow-up appointments (oxygen checks, weight checks, cardiology echos etc.) can sometimes feel like a full time job, especially knowing that every visit we make to a doctor’s office puts her a risk of exposure to a new germ or sickness. Luckily our primary care physician is understanding of her extra risks, and allow us to always have the first appointment of the day. And although the pandemic has increased her chance of contracting COVID-19, it has also made hospitals and clinics especially aware of infection control and cleanliness, which is a relief to families like ours.
The other challenge we’ve faced having an infant with PH during a pandemic has been balancing her exposure to the community, friends, and relatives. While we want her to access these enriching and important experiences, we are acutely aware of how her pulmonary hypertension and Down syndrome make her immunocompromised and at-risk for hospitalization over something as simple as a cold. Like most things, we take this day by day and just do the best we can.
Despite her many medical obstacles, Louisa remains an absolute joy to be around, and is truly the light of our family. We wouldn’t trade her for the world!
-Sally McCance, Louisa’s mother
Team PH’s Unmet Needs Fund helped Louisa’s family buy groceries and gas to get to and from the hospital during Louisa’s hospital stay. Make a donation to support pediatric patients like Louisa and their families at teamph.org/give.
