Our son Peter was diagnosed with Trisomy 13 (Patau syndrome) twenty weeks into our pregnancy. Peter was born on December 13, 2004 at 8:19 p.m. He weighed in at 7 pounds and was 19 inches long. Simply put Peter has an extra thirteenth chromosome. The doctors informed us that this is "Not consistent with life outside the womb." The prognosis was that Peter would likely, not survive past 24 weeks from conception. This site is a testimonial to the power of prayer and faith in God. Peter is sleeping in a carrier next to me as I write this. We brought him home from the hospital after two very difficult days in the hospital. The stress of worrying about Peter's condition was eclipsed by the administrative wrangling over the Do Not Resuscitate (DNR) order that a was put into place prior to his birth. This all or nothing order forced us to fight for Peter at every step. But, alas, he is home. In spite of a complete cleft lip and palette. He has difficulties, but we love him and thank God for every moment. Our friends and family continue to pray with us that the Lord’s purpose for Peter will be known. But for myself, I see some of the power of his being. We continue to hear of groups of many denominations praying for Peter. Each person is praying in his own way and offering support to our entire family. Friends from all over have been supporting us with prayers, offers to help with our intense logistics, meals, and gifts. Many of these friends we’ve known for years, but some we’ve just met, some we don’t even know. Someone stopped by our house and left a new outfit for Peter without letting us know who they were. We could never hope to thank everyone enough for all that they have done for us with their support, but I offer this opportunity to share in our joy. Our special thanks goes out to our nurses in the delivery room who helped with the DNR issues and the doctors who were all or nothing, all of our friends at St. Bernadette and at Nativity Catholic churches, especially Fr. Beres for being our priest on call. Mary Ruth you've had an incredible impact in our lives and we thank you for toughing it out. You were exactly where God intended.
Saturday January 22nd 2005 in his mother's arms, holding his sister's hands, he took his last breath and now rests with our Lord.
Peter left us with much to do. Working with INOVA Fairfax Hospital we've created the Inova Perinatal Care Program. The program is designed to help families when they need it most. The last thing they need to worry about is seeking out information when they should be preparing and bonding. The Perinatal Care Program is the first stop to find the resources and information you need. Read more about the program. We are making great progress. The program now has a patient navigator at Inova Fairfax hospital who assists all of the referrals from any of the Inova system hospitals. This is exciting to us because it means that we can grow the program and begin to help people immediately. Fund raising is still an important element to the program and we hope that you can help. In the past, the Perinatal Care Program was listed in the Booz Allen Classic's Birdies for Charities. This was an important fund raiser for us. We have already received support from Booz Allen and many others, but this program is funded entirely by donations. The Support the cause link will allow you to make your contribution now. Every action you take, from spreading the word to spreading the wealth through donations, will make this well needed program fulfill the mission Peter brought to us. Thank you for all of the support you've given so far.
Feel free to follow the link below to learn more about Peter and view our photo collection:
Photo Gallery