Thursday, February 28, 2008

Organization for Families with Conjoined Twins

We are so excited to make some forward momentum on this organization! We have received some incredibly sweet phone calls and emails from families who have their own special experience with their conjoined twins. Although I felt I was prepared knowing the statistics and survival rates of conjoined twins, I've found that each family's experience is so tender and personal, that it has certainly given me cause to reflect on these families and their strength. Consequently, we will be investing some very focused time in getting this started and hope to be able to assist families soon. Thank you all for your encouragement!

Saturday, February 2, 2008

Emma & Taylor Donations & Future Non-Profit Organization for Families with Conjoined Twins

These past several years have been full of ups and downs that have created experiences for our family that we would have never expected. We never expected to have 6 miscarriages. We never expected having conjoined twins. We never expected our daughters to come home. And we never expected to go down a road that had hope for a separation. What we did expect though, was that whatever lay ahead for our family, that we would do our best to manage and keep this a positive experience for us and our children.
Why a Donation Fund for Emma & Taylor? Over the course of the past 17 months since our daughters birth, we have explored separation options and sent their file to several top ranked doctors around the world. The response was the same: What a miraculous situation that our daughters are alive-they shouldn't be, and to their regret, the only option to separate would be to sacrifice one for the other and with a heart transplant. At first, these were disappointing conversations to have, but certainly we will take our daughters as they are than risk one life for the other. And so we were content to enjoy them as they are, for what little time we may have. But over the past few months, we have learned of an artificial heart for toddlers that has been developed and successful in patients. We are to begin preliminary testing for separation in the coming weeks, and if things go well and we feel comfortable, we will proceed towards a separation for our daughters. Insurance will cover all the medical testing and surgeries, which will occur both in and out of state. From that point, the best location for preparation and surgery will be determined, and we will need to relocate for several months. The preliminary plan is to give each baby an artificial heart, allow time to recover and regain strength, then have their artificial hearts replaced with donor transplant hearts. Again, insurance will cover these medical expenses, but we are not in a position to manage travel, housing and time away from work over this broad span of time. That is the purpose for the donations.
Future Non-Profit Organization for Families with Conjoined Twins: My husband and I hesitated about seeking public funds for 2 main reaons: One, we were concerned about raising funds and not going forward with a separation if everything didn't feel right; and two, we were also concerned about the possibility of having excess funds. After much thought and conversation, we concluded we felt comfortable raising funds only if we committed ourselves to a non-profit organization to help other families with conjoined twins. Conjoined Twins occur in about 1 in every 100,000 births, approximately 40 per year in the United States. Of those 40, 25% make it to full term and birth. Of that 25%, or 10, 4 of these sets of twins will survive the first day of their lives. Now of those 4, some may survive a few days or weeks, some may even be able to come home from the hospital if they are able to ween off oxygen and feeding tubes. And maybe there will be one set that has long term survival and separation possibilities. We tend to only hear about that 1 or 2 sets of conjoined twins that were born and have been separated. And as wonderful as that is for those children and their families, there are far more families that have had to bury their children. We know how it felt for us in handling the very real possibility of losing 2 children at birth, which was a very heavy burden, we can only imagine the reality that this is for so many families. And although we cannot change a mother's challenge of empty arms that ache to hold her children, our goal is to create a way to lighten the financial burden of funeral and burial costs for these parents thru an organization for families with conjoined twins.
Donations for Emma & Taylor Bailey & Future Non-Profit Organization for Families with Conjoined Twins:
We've been having a few problems keeping these accounts secure and have for now, pulled and closed the accounts. We hope to have an alternative soon--