Subject: [cherubs2] HELP! HELP! HELP! HELP! HELP! HELP! HELP! HELP! Date: Mon, 4 Jun 2001 20:25:50 EDT From: doyleew@aol.com Reply-To: cherubs2@yahoogroups.com To: cherubs2@yahoogroups.com, cherubs@yahoogroups.com Everyone, Just a few days ago, all members received the Spring Issue of the Silver Lining or they were given notice of it available on the CHERUBS web site. I read Dawn's words, now probably a dozen times. I have seen posts to BOTH the grieving parent's and the open listserv of how do we prevent CDH from happening. Many of you have very valid concerns that CDH is genetic, environmental or just a fluke of nature. A year ago, I was franticly looking for the "cure" myself. One day, there will be one. Today there is not. Doctors, researchers, nurses and we all have no real concrete idea what causes CDH. We do however, know what can save the lives of these wee babies. You see, in reading what Dawn revealed to all of us, I always knew there was more to her and Jeremy's story with Shane and his care than revealed. In his story on his website, I could just sense there was something missing from the whole story, and I've read it over and over, before Cecilia was born and also after she went to heaven. I am the first one to defend medical professionals in some situations. They are human and the general "society" out there places them above humanity - for whatever reasons. My personal thoughts are if someone makes a mistake - a human mistake - we all make them - that should be accepted - if it is negligence or malicious - that is when the law should come into play. What happened to Shane and many, many other babies out there was negligent. Parents need to be informed. When a baby is born as sick as our children were, all of our "parental duties" are taken away. The only thing we have left to do as parents is make the very big decisions. You see, I had the ideal situation with CDH. Right now, many of you are thinking to yourselves, "Elizabeth, how can you say your situation was ideal. You lost Cecilia." First, Cecilia's body is no longer with us, yes, but that spirit was much to strong for that body and the spirit lives on. Second and most importantly to this post is, we had an Ultrasound by a doctor (Noonan) who was certified and he did make the diagnosis and gave us "it looks like a hernia, but I'm going to send you to Dr. Thiagarajah, he will know exactly what it is." That was on a Wednesday and on Friday we were at Martha Jefferson Hospital having a Level 2 Ultrasound and were given the devastating news - CDH, the options and before we left, Jennifer Boner, MS gave us a flyer for CHERUBS. We were not alone! Just knowing that was a relief. (Thank you Dawn.) I will not lie and tell you that carrying Cecilia for the remaining time was not hell, I cried almost daily, wondered what I did wrong, wondered why God was punishing me and I questioned everything I ever did. My emotional rollercoaster ride was at the beginning. I coped by remaining positive. She would come home, we could deal with this. If she had half the fight of her parents, she wouldn't have a problem. We were giving the information to decide ahead of time where we would give birth and what would happen and could happen in the future. We had her at the University of Virginia Medical Center - Children's Medical Center in Charlottesville, Virginia. The only Level 3 NICU in Virginia. We met her surgeon, Dr. Bradley Rogers and Dr. Robert Boyle, Pediatric Neonatologist, who is also is the head of the Ethics Committee at UVA. We toured the NICU and we joined CHERUBS. I contacted Dawn in July and she called me back a few days later, despite the fact that Shane was going through so much at the time. In September after purchasing a computer, I joined the Listserv. I sat back and read what many were dealing with from their own CDH survivors. I finally posted and received so much support from those here it was amazing. Then we finally embarked upon the day of delivering Cecilia. Nothing you prepare for is like the real thing, is it? I could not imagine not knowing and all the information being given to me at one time, after her birth. I would have been a basket case, not that there were not times I still was after her birth, but a calmer basket case. And guess what? Cecilia had "experimental" procedures done - but before anything that was done, from a central line, to surgery to the reduction of her silo patch, we signed our names to papers of release. Those doctors explained everything to us and answered our questions. What experimental procedures you may ask? Well, Nitric Oxide was considered experimental until late December, 1999. Cecilia's kidneys failed after her repair surgery. >From that point, hemophiltration was done through the ECMO pump. She is the longest ECMO run at UVA - a medical first there - thirty-two days. Before she was taken off ECMO they had the Kidney Specialists speak to us. Only one doctor there had seen a baby on Hemophiltration at another hospital, none had ever put an infant on hemophiltration. And Cecilia would be the youngest (ever in the world) and the only patient on hemophiltration ever at UVA. The other option was to let her go - and UVA was not ready to allow that and neither were we. She had too much fight in her. She was 100% there and being extremely active and social. A typical baby in an atypical situation. Then again, Cecilia was never typical. So, in our case, we had everything that Dawn is pushing for in the petitions. We have no regrets in the care that not only Cecilia but we received. I truly believe that has helped in our grieving process. We don't question things that were done. We don't have a reason to second guess the care she received. Evidence alone is that Cecilia had a silo patch for over 20 days - her stomach was open except for a mesh that covered it as they waited for her skin to stretch so they could finally close her - NO INFECTIONS! Not one. She also went from being a 5 pound 13 ounces to 7 pounds 9 ounces on Lipids and TPN alone in 32 days and being as ill as she was. What I want you all to do now is fight for all parents and babies out there. We don't want any more to die out there due to misinformation, not detecting the problem or having no support through their ordeals. A cure is a far-off thing. Right NOW there is something we ALL can do. We can have our friends, family, coworkers if it is allowed, neighbors, grocery store employees, clients, church members, and so on sign these Petitions. Do you just plan to stand by and wait for a cure? Sometimes we have to make things happen. This will not only help CDH babies but many others out there too. You want more attention to CDH? Obtaining 100 signatures each or more - and don't stop at 100 if you can get more - would add up to 90,000! CHERUBS would make an impact that NO ONE out there could ignore. But Elizabeth, I'm so busy, I'm grieving or I'm busy with my sick child - I'm busy too. I work full-time plus. I have a teenage daughter, that at times I think is more dependent than an infant. (Not a complaint - I've spoiled her.) We have sports practices, therapy and loads of other things out there I have to keep up with too. (Not to mention the time I spend as a volunteer.) Carry the petitions with you and any opportunity try and get signatures, ask friends and relatives to do the same. (If you are not up to it, have a good friend, relative or someone you know get the signatures for you. Or get 5 friends/relatives to get 20 signatures.) This is not our lives, this is not our children's lives this is for the future lives out there. For those that have read this and already have gotten signatures - thank you and treat this as just a friendly reminder that crossed in the mail. This is a challenge - I'm going to get at least 1,000 signatures! Does anyone want to top that? Dawn was begging for this help - and I'm willing are you? Advocacy - it is about time, Elizabeth Doyle-Propst, Proud Mom of Cecilia Winn Propst, 11/2/99 - 12/10/99, LCDH, etc. & Rachel Elizabeth Pierce 6/6/85 Virginia State Representative [Non-text portions of this message have been removed] CHERUBS- The Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support cherubs@gloryroad.net http://www.cherubs-cdh.org PO Box 1150, Creedmoor, NC 27522 (919) 693-8158 Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/