Help Mia Heal

On June 10, 2016, my friend, Christine, and her husband, Joel, had a beautiful, little girl named Mia. Mia was born full term, weighing 6 lbs. 12 oz., and became a resilient, little girl who loves to babytalk and play with her older sister. One time they even found her talking to her toys!

Before the Despite nursing and checkup visits, she was hospitalized by day 5 for a week due to dehydration and significant weight loss. Over the next few weeks, they found that she had a posterior tongue tie and had that corrected via laser. When she was two months-old, feeding troubles appeared again. Mia started to turn away from the bottle and had trouble gaining weight nursing. She had a tongue tie that was fixed and started physical therapy for torticollis, but that was just a piece of the puzzle. She gradually developed an aversion to eating altogether. She had to be distracted and eventually could not eat awake. After a few weeks, it became clear that Mia had a long-term challenge - trouble eating outside of her sleep, which is not normal. Some days, she is in so much pain that she can only eat one ounce of milk before pushing the food away. Christine and Joel have tried everything that they can to get sweet Mia to eat: revise tongue tie, distraction, swaddle, switch bottle and having someone else offer. However,  after hours/weeks/months of hard work, they found out that she had dropped to the fourth percentile, and was diagnosed as having a "failure to thrive." As a mother myself, I cannot imagine having to hear these words from a doctor.

Even though Mia has narrow pulmonary valve and is in physical therapy for minor torticollis, she has not given up.  She is a fighter, like her mom. Even in the midst of all of this stress, Christine's motto has been "Love, pray, repeat." For this family, LOVE has been a very active verb. They've reached out to other families, conducted massive amounts of online research, and traveled to meet with a speech therapist that specializes in feeding issues. They have done everything that they can to enable her to gain weight and keep her from more trips to the ER.

Then there are the avoidable issues that make a stressful situation almost unbearable: ranging from bloodwork taking hours at the lab, to a cardiologist with a packed schedule, and the CHOP Feeding and Swallowing Center not being able to make an appointment for over a month.

And their love is starting to pay off.  At Mia's four month visit, she had gone up to the 7th percentile (after not moving up in about three months). Though she only weighed12 lbs., the family reached out with thanks, and double down on their efforts. As of October 23rd,  Mia was up to the 10th percentile... and I'm confident that she will continue to grow.

I started this campaign so that Christine and Joel would know that we're here for them. Outside of the financial burden that this has become for the family, there is also a huge emotional drain.  Even though we cannot all physically be with them, we are reaching out, doing what we can to support them. We now know that while Mia is improving, her situation will require long-term medical services, which will be very costly.

The family has applied for medical assistance and is waiting for an interview for supplemental social security, but those will take a while. For the past few months they've spent money on her revision out-of-pocket, and have had to pay for travel to appointments, parking, and co-payments. And moving forward the costs continue. The specialist co-pays are $50 with about 2-3 visits weekly (weekly weight checks are an additional $30).  Her medication is $200+ monthly, and expenses so far have totalled $1516. They've used up their pre-tax dollars already so it is all out of pocket now. 

In the midst of these expenses, the family has had to take (unpaid) time off from work. Christine has to take 9 weeks of unpaid leave initially with all of the appointments.  While she is back to work full-time now, and fortunate to work with a supportive company, she does have to leave urgently and take additional time off as needed. Ideally she and Joel want to adjust their work schedules to give Mia the one-on-one care that she needs at home, but that would mean more unpaid time. Our support for some of these expenses will make it a bit easier to do that.

Finally, Christine and Joel need another car.  When Mia has an appointment, whoever is taking her, has to also drop off and pickup their eldest daughter from school.  This means that Mia spends additional and unnecsaary time in the car. That time would be better spent one-on-one trying to get Mia to eat.  If Christine and Joel could split that care, it could mean a few more ounces of food for Mia daily, without additional medical expenses. 

Please stand with us, so Christine and Joel know that they are not in this alone.