Meet Kimberly- she is seven years old, and a dedicated Brownie Girl Scout who loves art and anything to do with crafting with her troop or finding a new adventure. She also enjoys playing Little League Softball for the first time this year. Kim has a very rare congenital heart defect that was diagnosed at 18 weeks gestation. This defect accounts for approximately 0.5% of all congenital heart defects- so rare is an understatement.

She was high risk and when it was discussed with her care team prior to labor- we did not know if she could breath room air or would require surgery immediately to breath properly. The birth plan was simply- find out how she reacts to room air and go from there. We had approximately 20 different specialists standing by; waiting for her arrival from not only labor and delivery- but cardiology, Pulmonology, cardiac surgeons, and more. She was born and despite all odds- she could breathe room air. Her only telltale sign- was her oxygen level sat around 85%.

It’s been 7 years of hospitalizations- steroids- preventative vaccines- home oxygen- inhalers- daily medications- and altered physical activities- but zero surgical intervention which is nothing short of a miracle that we are so grateful for.

Unfortunately- she is declining and showing more and more signs of distress during intense activity or increased work of breathing. A recent exercise test proved that her oxygen levels are rapidly approaching low 50s when she is active and that happens in less than a minute from the start of exercise and it takes her several minutes to recover. Her ability to maintain exertion is non existent and this affects her daily life both physically and emotionally + socially- just one way is modified PE classes and daily pretreatments prior to exercise.

Cardiac surgery was discussed between her cardiology team in Maine and the cardiologists and surgeons in Boston and they now believe surgery is her best option to improve her physical health but also quality of life. But it was said maybe summer of 2025- until the results of the exercise test moved it to July 2024. She will be having a major open heart procedure to route her pulmonary artery through her VSD and fix the “looping” transposition of the arteries defect as well- and hopefully widen that pulmonary artery to increase her overall resting oxygen level.

This means there will be several appointments between now and her surgery date in July that we will be commuting to Boston for- and paying meals + housing during certain scenarios, as well as paying for parking at the hospital and any specialty items she may need (including new clothing items she can wear without putting her arms above her head, or requiring strength to pull up- as she will not be able to perform those actions for approximately 2-4 weeks post operation). Currently we have 10 various appointments prior to her actual operation we will need to attend to ensure her anatomy is correct for the procedure chosen- and due to her anatomy she is at an increased risk of having electrical issues between her heart chambers which would further extend out stay while they work to correct the electricity- or possibly put in a pacemaker.

Then- she will need to recover after surgery- and unfortunately the window to full recovery is quite wide. We are being told it will be several weeks to recovery to full “normal” but it could be more or less depending on complications or her progress. I recently learned that during open heart surgery you aren’t wired and stitched shut immediately in the OR like most other surgeries- you’re actually left “open chest” for 2-14 days to allow for inflammation and swelling to reduce to eliminate risk of organ damage due to swelling against the ribs-- crazy to think about right?

So all of that being said- it leads us to today. We are 2 months away from surgery now- (a surgery we thought we had over a year to prepare for..) and we have a good idea of what our ‘must pay’ bills will be- but I will be out of work on FMLA for the majority of this time- which is currently unpaid in the state of Maine. We have also made the hard decision that Conner (dad) and Leona (sister) will need to stay in Maine during this time- so he can work to keep us somewhat afloat and eliminate travel/lodging/food during any trips.

I know that inflation has been hard on everyone recently and it would really mean the world to us if we didn’t have to worry financially about our rent and basic needs during this already treacherous- emotional rollercoaster. We want to be able to focus our energy on her emotional and physical needs during this challenging time for her- and not have to focus on how we are going to make ends meet. We are truly grateful for every penny given.

If you’d like to send her a card, words of encouragement, or handheld activities she can do while recovering- please do so at the following address. All we ask that you wait until the end of June to begin writing as the PO Box will not be regularly monitored until then;

Kimberly

PO Box 992

Brookline, MA 02446