Our worst day is someone’s best day. These are the words that Shane and I live by – especially when we are having a rough day or learn of another medical issue that our daughter is having.
Melina Daveed Muth was born on December 2nd, 2014 at Duke Hospital in Durham. She was diagnosed in utero with a cleft lip, probable cleft palate, ventricular septic defect and a rare congenital heart anomaly called truncus arteriosus (according to the center for disease control and prevention, there are only 300 of cases per year in the United States). Just as the doctors predicted, Melina was born with every diagnosis they predicted along with an additional hole in her heart. She had open heart surgery to repair one hole (with GORE-TEX of all things) and they used a bovine conduit to repair her truncus arteriosus. Since then, she has had four more surgeries, two for her gastrostomy tube (G-tube), tubes in her ears and a partial cleft lip and nose repair. She is slated to have her full lip and nose repair September 10th, back to the hospital September 17th for suture removal, cleft palate repair in December, and most recently, we learned that she will need yet another open heart surgery sooner than expected because unfortunately the conduit that was placed at nine days old is failing.
Along with the eight surgeries listed above, Melina has a long, but very positive prognosis, road to recovery. When a conduit is placed, it does not grow with Melina, which means that as she grows, she will continue to require surgery. And of course, if the conduit fails as this first one did, or needs to be modified with stints to last longer, we are looking at another three to four heart surgeries before her final surgery when she is roughly 18 years old. For her cleft lip and palate, she will need her nose constructed when she’s about four years old, she will have an alveolar bone graft where the cranial plastic surgeon will remove part of her hip to add bone to her gum ridge so her adult teeth can grow in, and lastly, she will have rhinoplasty when she is a young woman as a final nose repair. We hope that she will not feed with her G-tube after two years of age – fingers crossed.
Because of all of these surgeries, hospitalizations, hotel stays and more, we have decided to ask friends and family for help in any way they can. Whether it’s donating to our gofundme page, making a deposit into her Bank of America savings account, joining us for the Triangle Heart Walk, sending us prayers or positive thoughts, we will take it all.
Although Melina has medical anomalies, they do not define her. Melina is the type of person who makes you smile by bringing happiness to everyone she meets. She has lived these first nine months with resilience and patience. She is genuinely happy and as far as she knows, everyone goes to the hospital and everyone has a tube in their tummy. She likes to try new foods and she still loves staring at those ceiling fans. She just learned to clap and now is giving out hugs. She is desperate to get our cat’s attention and we are hopeful that he will motivate her to learn to crawl.
Shane and I feel we are so fortunate to have Melina in our life but not so fortunate that we can easily manage her medical bills. We have set a goal to raise $50,000 over the next four years. All money raised will 100% go to Melina’s bills and any hotel stays we have when we’re at Duke (we’re too close for the Ronald McDonald house). Primarily the money will pay for last year’s heart surgery and five week hospital stay, next year’s heart surgery, subsequent bills and her other surgeries. Any money left over after she is 18 and no longer requires surgeries, we have vowed to pay forward to another family in need.
We cannot thank you enough for your consideration and help. Please do not hesitate to contact us with any questions.
If you’d like to join us for Triangle’s Heart Walk on Sunday September 27th at 2:00 p.m. – please register on our page “For the love of Melina” at: (https://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1125186&lis=0&kntae1125186=4AEF7A14D1384FB09C5E26B99AAF1E5F&supId=391859601&team=6515064)