Chapter 15 – Growing Pains

There have been a lot of growing pains in the development of the IVPF. We’ve grown as human beings right along with it. People who come to us diagnosed are terrified. Those of us who weren’t only wish that we’d had that same chance. No matter the outcome, vasa previa traumatizes everyone it touches; inconsolable grief for the angels, and heart-stopping terror every time they look in their baby’s face for the miracles. A sense of guilt and “what if” plays on every member’s mind.

Everyone who volunteers does so only to help save future babies from this heartbreaking condition. There is no paid staff. This is a huge challenge. People come and go as their needs are met and they learn how to live again. Very few have the time or energy to put into creating awareness.

Changes in awareness keep occurring. We have gone from doctors insisting vehemently that vasa previa cannot be diagnosed to arguments over the lack of a standard of care regarding management. Many times doctors will attempt to manage vasa previa like placenta previa and it is just not possible to get a good outcome for the majority of vasa previa cases this way. Mothers are often in the position of having to educate their doctors about appropriate management. Discouragement runs high, but the persistent stay on for the surviving babies in this atmosphere of ignorance are joyous miracles to each and every one of us. For those of us who have lost babies to vasa previa it is vindication that our babies have not died in vain. For those who have those little miracles in their arms it is proof positive and encouragement to others that their babies CAN AND WILL survive. We operate from the standpoint of each being just as important as the other.