To raise awareness for CHD – all parents of heart babies were supposed to e-mail and mail a letter to Oprah on 1/21. Feb 7th-14th will hopefully be recognized worldwide as CHD week.
My Letter….
Dear Oprah,
Thank you for taking the time to read these very important words. My name is Melissa Dickerson and someone I love has been affected by Congenital Heart Defect (CHD). Alyssa Roze was born 11/13/09, 5 weeks early via a surprise c-section after being told during a stress test that I had severe pre-eclampsia. It came as a huge surprise that we would be having our daughter that day. To say the least we weren’t prepared, let alone did we have the slightest clue as to what news was to come just a few hours later. Alyssa was born at only 3lbs 13oz. I didn’t get to see her until 5 minutes before hearing she had a heart defect called Tetralogy of Fallot, and then a transport team whisked her off to go to another hospital that was more equipped to care for her. I wanted to die. It all felt like a dream, even the next day when I woke up in the hospital without her I felt as though this couldn’t really be happening. I felt and still feel extreme guilt for bringing a child into this world who will have to endure this. Open Heart Surgery is planned at 8 months of age, unless something happens causing her to need to go in earlier. It is hard to hear that CHD is the most common defect that children are born with and until my daughter was born I had no idea what it was. It has been a little over 2 months and every day is a struggle. Just recently we found a support group and are currently communicating via Facebook. Being Pre-mature as well as being a “heart child” requires that my daughter gets a shot monthly (during the flu season) called Synagis which helps protect her from RSV.(RSV is like a normal cold for adults and can lead to death in infants.) My mouth hit the ground when I received a call from CVS pharmacy, who is supposed to send the shot to the doctors office for Alyssa, telling me that they needed $960.00 before they sent out the shot.$960.00 dollars every month? Again I felt like I failed because no way could I afford that.We would have to sell my husbands car. Come to find out that they only had my insurance on file, where as Alyssa is covered by both my husband and I. So then the shot got reduced to $250.00 monthly. My mom has offered to pay for the shot for Alyssa b/c even $250.00 a month extra for a family of 4 just wasn’t do-able for us. Everyday we are grateful for all of the support we have gotten. We applied for SSI – and after collecting all the forms, filling out all the paperwork, and waiting to be seen…just to be told that we make too much money to receive any help (and I can assure you we do not have a lot of money), yet due to her meeting not 1 but 2 of the criteria she would have been approved very quickly. Devastated, not knowing how we will pay for her medical care we asked what else we could do. We were told of Medi-cal (which we are still waiting to receive the paperwork for), and a program called In home Supportive Services (which advised me that we have to be approved by medi-cal first before we even apply and due to funding if we do get approved it won’t be for much). It is important that anyone expecting a child knows about CHD and we as a country need to be better prepared on how to deal with it. Thank you for everything that you do, and thank you for listen to our story as well as many other CHD families.
Heartfelt Thanks,
Melissa Dickerson and Family
So most of you – if you have read my blog have heard this all before. But hopefully with all CHD families participating we will start to make a difference.
I haven’t quite figured out if the pediatrician just doesn’t like us or maybe he’s moody – maybe he is just annoyed b/c he sees too much of us… I dunno but something just feels weird. They have had the results back from her belly button and made a referral to the urology dept for our daughter yet never called with the results or called me back when I called to inquire about them. He told me that day that if she has what I originally believed she had that it can turn out to be bad if we don’t get it corrected. (so thanks for filing us in now!!! – GRRR) We also told him that we had tried getting a hold of his office b/c we were sure our son had an ear infection – he didn’t even bother to look at our son. Frustrated - the next day when we saw Alyssa’s cardiologist we asked if he had any recommendations for good pediatricians that would also take in consideration her heart defect. Our current pediatrician was actually highly recommended b/c other doctors refer their patients to him b/c he is known for being educated on the heart and can assist more so if there is a problem… so as it stands I guess we will keep him. At the cardiologists the visit went smoothly. I was put into a PANIC when her oxygen level was at 89, when her last read out was at 98 just 2 weeks prior. She had a cold and it caused it to drop. Needless to say b/c of that it prompted me to beg my husband to stop by the office today just so we could see what her oxygen level was . A safe 98 again. WHOO HOO!!! We had made an appt. with the social security office to get SSI for Alyssa which was what a social worker had told us to do. SO we arrived at the appt. on time with all of the required (a ton) of paperwork filled out and ready to go. We waited for what seemed like an eternity (or an equivalent of DMV wait time) to be seen. Once we got in we sat with a nice gentleman that stated simply I made too much money and because of that she won’t qualify for the program. Under different circumstances she would be a perfect candidate and would get approved right away b/c not only the TOF but also b/c she was premature with a low birth weight. He told us what some options were , and we will have to look into them. This may result in Chris staying home to take care of our kids. - I can’t lie and say that doesn’t hurt a little bit b/c I would love the opportunity to be able to stay home and care for my children however due to the fact I make more money and I am in a management position it makes more sense for me to continue working. – So this is just a little update on what has been going on in our lives. I will try to keep this blog more updated than I have as of recent. We have just been a little busy 
