Jill Gambon is from Boston Massachusetts. In 2007, her life was turned upside down when her daughter was diagnosed with Hypoplastic Left Heart Syndrome. With a series of surgeries only a handful of infants at that time have had, she now has a fully-functioning four chamber heart. After six heart surgeries, she is fully pacemaker dependent and is in heart failure. They love to share their experience, trials and joys with others. And to give hope and support to those who are on the congenital heart defect journey. Watch their story.
Ahhhh summertime...the weather is warm, the days are longer and it is the perfect time for vacations.
Vacations, especially ones far from home, can be a bit challenging, if not downright nerve-wracking for those with heart defects.
I'd like to share a few tips I've learned along the way, hoping you don’t have to learn on the fly like we have at some point along this crazy journey.
For starters, look for all hospitals close to where you are staying. See what services they provide. Confirm with your insurance that you are covered at the facilities. If you are driving a long distance, keep note of hospitals along the route.
Find the closest pharmacies, and call to ask if they carry your type of medications and dosages. For more remote areas, or countries where the closest hospitals are not able to handle an emergency should one arise, ask your insurance company if they cover Medivac flights. This is especially important on cruises and in foreign countries and islands. Always purchase emergency medical travel insurance, while it adds a bit of extra cost upfront, it is invaluable if needed.
Carry two sets of medications with you in separate carry-on bags if flying. If on a road trip, keep one set in car and one set in your bag, and have at least three extra days’ worth. Trust me, there is nothing more frustrating than spending an entire day of your vacation going back and forth with doctors and pharmacists if your medication is lost or destroyed in transit.
Triple check that you have all the ID cards you need for medical devices. No one enjoys a surprise hour-long delay when a pacemaker sets off alarms and security can't believe a child has one. Print out an info sheet listing all your medications, procedures you have had done, your safe baseline vitals, and all doctors names, phone numbers and emails. Keep this on you at all times. I can't tell you how many times we've been in an ambulance and I just hand them the paper and instead of being distracted trying to remember every detail needed, I can focus on my daughter. Keep one in your luggage as well.
While this can seem a bit daunting, and some may think a bit overboard, emergencies can and do happen. Having all this planned in advance makes them more manageable.
Above all else, enjoy it! You deserve it! Savor the rare opportunity that you get to watch your child be out of their comfort zone and see and try new things - ride that jetski, hike that trail, zip down that zipline, lay on that beach and nap (my personal preference).