Nov 5, 2008

I'm Glad you asked

There have been an onslaught of people wanting to help out our family and raise money. Thank you so much!!! Here are some questions I have received via email- just thought I'd post them. Mia is having a great day- she smiled at me today and is melting hearts near and far. So... here's the Q & A so far- feel free to ask away.

* If I'm understanding what I've read, then if you have $450,000, then they will put you on other donor lists to help Mia get a heart faster. Is this right?

Mia is currently on the list in region 6. Hearts can come from other regions if there are no babies currently waiting in that region. Transplant hopefuls are allowed to be listed at multiple centers to increase the chances of getting that organ. Due to the wait time, we decided to check out other centers. We were trying to get listed in Denver but they require a deposit of the remainder after insurance. Our insurance is a Washington state insurance which will not cover the cost of a transplant in Colorado. In that case we would have to pay the entire amount up front just to get her listed at that center. Crazy, I know!!

*So my next question is, do you have to pay the $450,000 only if she gets a heart from the extended list, Or is that the fee to just get her on the lists. Are the chances a lot higher of a heart coming sooner if she gets on the other lists?

No, we do not have to pay that amount if she gets her heart here. Yes, we have to pay that to get her listed in Denver… just to get her listed. It is kind of a catch 22 because if we go to Denver a heart might come available here. Denver is more toward the center of the country which opens up the population pool quite a bit, but you never know. That is the difficult thing about this- there truly are no guarantees and no one knows when and where there will be a possible donor. We truly want to stay here in Seattle because we love the doctors and nurses, and we live here. However, I would fly ANYWHERE if we could just get her transplanted. If we did get listed in Colorado and had her transplant there, we would have to live there for at least six months post transplant. It would be the more difficult road for all of us to go to Colorado, but we would do it. The center in Denver transplanted their A1 status, the same blood type as Mia a couple weeks ago.

*Next Question: So right now Mia is on the Seattle Donor list. Does this mean she can only get a heart from Seattle? If she gets on the other list, where can she get a heart from?

We are in Region 6. You can look on UNOS to find out which states are in which region. If listed in Denver, it is a completely different region. The heart can be out of the body for six hours. Hearts can come from different regions if there is no one waiting in that region and it can get up here in time.

*Is she currently #1 on the list in Seattle, or does it just go by whatever heart matches? How often do hearts come?

Mia is first on the list for her size of heart. Because her heart is so big she can accept a larger heart. She is second on the list for bigger hearts. There really is no way of knowing when a heart will come. Some babies wait 30 hrs, and some wait months…like us ;-) Parents have to be willing to donate, and it has to be a good strong heart. Currently there are 7 babies waiting for a heart here in Seattle- if there was a heart it would go to the baby with a blood type match first. Even though Mia can accept a heart from a different blood type, it would go to the matched type before it would offered to her.

There is no hard and fast rule on when hearts are available. One of the coordinators told me when Mia was born that the wait time is usually somewhere between two and four months. Some babies have to wait a long time. We live in the corner of the United States which limits the radius. Someone could argue that it might be better to be listed here because the lower the population the less demand for transplants. That would usually be the case, but right now there are seven babies- which is a lot! All of the information is available to the general public on UNOS- you can look up wait time, blood type, age- it is very interesting.

Please feel free to ask- the more people know about Organ Donation the better :-)

Part II:

We are so overwhelmed by the generosity of so many. I am amazed by the willingness to give of time and talents on Mia's behalf. In an effort to plead our case, I want to clarify so there is no misinformation circulating as to what our needs are exactly. As far as I know nothing false has been posted concerning Mia. We aren't currently pursuing a heart from another state, and even though all the donations that have come our way will still be needed for Mia and her heart transplant related needs, we can't put a number on what our needs are exactly. The reason we aren’t pursing a listing out of state is because if were were listed there, our insurance wouldn't cover any portion of the transplant, and transplants typically can cost into the millions. The extent of Mia's needs are unknown. Her health will always be fragile and her medications will always cost us a lot out of pocket. She may visit the hospital as a patient every month for the rest of her life, or she may come home and prove to be a relatively healthy heart transplant recipient. There are too many unknowns at this point. There are expenses that we currently face from her care, that were above and beyond her insurance coverage. She was life flighted one time and we don't yet know what that cost will be. We have two children who need the help of a nanny daily. There are transportation costs from driving to and from the hospital. At this point, this is what we know. Our insurance will only cover a transplant maximum of $250K. Childrens Hospital has awarded our family some financial help with various hospital expenses. We are always working toward ways that we can be granted financial mercy by those who care for us while we rely on the generosity of our friends to care for our older children on a daily basis to save the nanny money for other things. We are carefully spending and striving to explore funding options to the best of our ability. Any generosity that is extended to our family as a result of Mia's situation is appreciated and applied to those areas of our financial lives that are affected by her medical needs, as listed above. I did not list all of the things we face during this time, nor can I possibly foresee what the future holds in relation to any of my little Mia's health concerns. It is my greatest wish that she gets a heart. If your generosity for Mia is financial, rest assured, we will need it and we will use it for her medically related needs.

If your awareness of Mia’s situation leads you to advocate for organ donation awareness, or to help those who currently aren't registered to donate life, to do so, I will be forever grateful. No one can put a number on the value of the gift someone can give by donating their healthy organs and tissues to those who desperately need them.


The Bankston Family said...

Ahh... Cute picture of Mia...she is so adorable.

Shauntelle ~ said...

I am so sorry. I hated trying to decide if we list Kaidence elsewhere or stay put. We had to decide between California, Denver or staying in Utah. Tough choices to make. I think of you all the time and tried calling the hospital one day when you seemed so sad. Please call if you need anything. You are in our prayers. Could you come to Utah? PCMC has done a lot of transplants this year already and I have been told that its a great area because many people do choose to donate.

With Hope, Faith and Love,
Shauntelle and Kaidence

Erin said...

Meems- Thanks for answering these questions...I have been wondering the same things and I'm glad to have some clarification. Would a friend with a Colorado address be of any help? Probably not, but I am willing and able and ready to do anything if needed. I can't believe the cost JUST to get her on a list! How frustrating and unfair! I hope her heart comes this week! That would be the BEST! Have any babies in Seattle gotten a heart since Mia's been waiting? Love you and still praying

Mimi said...

Nope, no hearts yet. When Mia was born there was only one other baby waiting- now there are seven. These sweet babies are being sooo patient.

Rebecca said...

I'm so glad that this is at least creating more awareness!

Steven and Whitney said...

Mia looks absolutely stunning in her little outfit. Good Q/A session. So many people are thinking about you guys and wondering what we can do. I know more about hearts than I ever expected!

Katie said...

Great post- so many of my questions answered. She is so adorable Mimi. I just love seeing her pictures! What wonderful friends you have with all of these giveaways!!! I think of you all the time and my prayers are steady for Mia getting that heart. Love and hugs to you!

Abbie said...
This comment has been removed by the author.
Abbie said...

I am cousins with Shelley McDonald Eggett and found out about your story through them and am so touched. I have one daughter who is almost eight months old and my heart just aches for you and Mia. I was wondering how much help your insurance is with the procedures Mia has already undergone. Are you also facing struggles with payment in that way? If Mia receives a heart in Washington, where will the money that has been raised go to? Will it help to cover what insurance doesn't pay?

I know you don't know me and it may sound strange but ever since I got Shelley's email I just can't get little Mia out of my mind. I will be praying for you all.

Baseballs and Tutu's said...

Love the picture of Mia with her mobile!
Thank you for opening up my eyes to organ donation! I have made the change for myself!

The Eggett Family said...

Mimi I think you should post your long comment on your blog so that everyone will see it. It explains so much and answers SO many questions. I don't think everyone will see it if it's under the comments. Just my 2 cents. Thanks for clarifying all of that. You have ALOT on your plate, more than any of us can even imagine.

Stephanie M Larsen said...

Mimi, thanks so much for all the info. I've been so concerned about the details but, wasn't sure I should ask. I'm glad that the wait time is usually only 2-4 months, that means statistically your probably close and all this can come to an end. How wonderful it will be when you two get to go home and be with the family all together. Just hang in there. We're all praying for you several times a day.

Anonymous said...

Hi! I am chosing to remain anonymous because I work for the OPO (Organ Procurement Organization) in Utah and I do not want to potentially get in trouble for contacting you. I have followed Mia's condition for a while now and honestly I cannot tell you how I even learned of your story. Like Kaidence's Mom said, PCMC in Utah has performed several infant heart transplant this year and all have been quite successful. I totally understand your plight with the money, travel, other children, etc. With Utah in Region 5 we do service a larger area plus we import several hearts for our status 1A babies. Several times as I have read Mia's story I have thought "if only she were here I bet she would be transplanted by now". I know there is no guarantee to that but I see so many hearts come through Utah because we have a great program, great doctor, great donors and a larger service area. It's such a difficult situation you are in. Please know I pray for you & your family daily. Your daughter is a miracle already and her fighting spirit is inspirational. Do you happen to know what Status Mia currently is? (1A, 1B). Also, what is her blood group?