tag:blogger.com,1999:blog-9999144.post4509267026757197945..comments2024-02-14T14:37:30.781-08:00Comments on Mother in Chief: Grief and other peopleMother in Chiefhttp://www.blogger.com/profile/10096344221710006618noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-9999144.post-45145210852946793062014-12-27T18:29:02.666-08:002014-12-27T18:29:02.666-08:00Yes I was an attorney at a big firm for almost 10 ...Yes I was an attorney at a big firm for almost 10 years when my son was born. I was also married to a doc for 6 years after law school. However, I was pretty clueless as well especially in the days before the internet. I was mindful enough to realize that Cedars didn't have the capacity to handle my son even with his moderate defect and transferred him to UCLA. On the flip side, because he was moderate, he was kicked from the CICU after one day only to have a life threatening MRSA infection in the crowded NICU. I try to catch people when they first find out so they can make the right choices and are prepared. After that it's like challenging their parenting skills to offer advice. People are getting a little more savvy because they can easily connect with others. However, I've seen folks put more effort into buying a crib or stroller than heart surgery. Part of it is too much trust in healthcare, lack of consumer information (we have no real stats) and, of course, fear and shock. However, places like Sutter (my former employer) shouldn't have videos on the web that they are one of the best for heart surgery. There needs to be some regionalization and organization just not sure how that is going to happen. It would be nice if more folks with kids with minor and moderate defects would get involved after the surgery is over. That's why childhood cancer is better funded. Anonymoushttps://www.blogger.com/profile/02284821298754297548noreply@blogger.comtag:blogger.com,1999:blog-9999144.post-41675368620263596802014-12-26T22:06:49.519-08:002014-12-26T22:06:49.519-08:00Were you a health care attorney before your son wa...Were you a health care attorney before your son was born or was his birth the impetus that launched you into that career? I can see how it is hard for people to keep fighting for larger causes because sometimes the day to day is all we can managed. Or as least it was that way for me. And I remember meeting a family at Camp Taylor whose daughter had a horrible surgery right after she was born. The doctors said that she needed it immediately at it was performed by adult cardiac surgeons, poorly. But sadly, in that moment, when all of this is thrust upon you and you have no idea what you should do or what is capable at other hospitals, you just go with what is presented. And like you said, poor outcomes are common. Brand new unexpecting parents don't know what to do aside from say yes, please give my newborn a chance. Mother in Chiefhttps://www.blogger.com/profile/10096344221710006618noreply@blogger.comtag:blogger.com,1999:blog-9999144.post-33210677904912390722014-12-21T15:21:02.994-08:002014-12-21T15:21:02.994-08:00My son had coarctation and a hypoplastic arch. Su...My son had coarctation and a hypoplastic arch. Surgery at UCLA - he's 12 now. We were in Davis for many years too and he went to Stanford before moving to New England. We have a foundation for his defect. I'm involved in health policy issues (was a big firm health care attorney for almost 20 yrs) related to poor outcomes at the now over 100 places that do peds cardiac surgery. Even with simple coarctation, there are kids messed up for life and heterotaxy or even simple HLHS kids have bad surgeries or are sent home to die. New England and California are a different story and its a shame because the people whose kids have simple or moderate defects could do so much good for research if they stayed involved. However, even for them, its traumatic (on a different level) and they don't want to think about it. Anonymoushttps://www.blogger.com/profile/02284821298754297548noreply@blogger.comtag:blogger.com,1999:blog-9999144.post-79973413115631795602014-12-16T07:00:42.607-08:002014-12-16T07:00:42.607-08:00That makes you strong, too.That makes you strong, too.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9999144.post-29600922663044062672014-12-15T22:03:24.156-08:002014-12-15T22:03:24.156-08:00It got harder the older he got because it felt lik...It got harder the older he got because it felt like every healthy day was one step closer to surgery and him dying. I always wondered if his single ventricle had a finite number of beats. And the older he got, the greater his understanding for his situation and his limitations. His awareness was hard to witness. When he was born, we weren't sure we'd get seven days, but we did. When he was four years old, we thought we were heading for transplant within a year, but somehow we got to 11 1/2. Each of those days were a gift, but there would never been enough days. I hate that he will be a statistic in research papers...I wanted him to be the one who surpassed expectations and broke records. I'm sorry to hear about your boyfriend who died and your near miss on that flight. I've often thought that life all comes down to luck and luck couldn't care less about whether I'm a good person or a bad person or a mediocre person. How old is your child and what is his/her defect?Mother in Chiefhttps://www.blogger.com/profile/10096344221710006618noreply@blogger.comtag:blogger.com,1999:blog-9999144.post-29908278168790587402014-12-15T21:51:00.790-08:002014-12-15T21:51:00.790-08:00He was happy. He had a happy life, and it was as n...He was happy. He had a happy life, and it was as normal as a life as we could muster given the undercurrent of doctor appointments, blood tests, long hospitalizations and unknowns. Mother in Chiefhttps://www.blogger.com/profile/10096344221710006618noreply@blogger.comtag:blogger.com,1999:blog-9999144.post-22467720129154492172014-12-15T19:40:56.002-08:002014-12-15T19:40:56.002-08:00Strength is finding a way to love the life we have...Strength is finding a way to love the life we have. Riley was strong. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9999144.post-37955370137881203792014-12-15T19:19:03.011-08:002014-12-15T19:19:03.011-08:00Heart defects are awful and I constantly wonder wh...Heart defects are awful and I constantly wonder why people are not more angry about them. The cardio who diagnosed me in utero said genetics loads the gun, environment pulls the trigger. I use that often to get people to think. Instead, they comfort themselves with angels or eastern "truths" that life on Earth is so fragile regardless (my husband even does this- maybe he's the smarter one). I feel that myself and my kids are entitled to a life. I get annoyed by the horror stories out there at the now over 100 (many small) centers that do cardiac care for prestige and to keep afloat. Babies and toddlers who die because their parents didn't know better - even sometimes the intelligent and wealthy ones. I know that's not consolation as it's so much harder to see children grow. I wonder when if ever parents feel ok that the child lived a good life - 20, 25, 30, 35? My boyfriend died the weekend he told his mother he was going to marry me. Never had kids - mine exist because he died. I was frankly too self-involved to even have a good marriage and his death changed that. My kids also exist because I flew home to LA from Boston on 9/10 rather than 9/11 and decided to have them because of it. We have no choice but to continue to live even if not the life we wanted.Anonymoushttps://www.blogger.com/profile/02284821298754297548noreply@blogger.comtag:blogger.com,1999:blog-9999144.post-46945571907775439322014-12-15T18:14:30.097-08:002014-12-15T18:14:30.097-08:00I've heard the "strong" comment so m...I've heard the "strong" comment so many times during Riley's life, and I too have wondered what it really means. If it means I didn't abandon my child who faced life-threatening challenges and surgeries, then I suppose I'm strong. But I always figured it's what any parent would do. Then again, I remember talking about this with a doctor in the ICU. He told us that we'd be surprised at how many kids with heart defects are in the foster care system. I just have done what my child needs me to do and I kept doing it because he needed me and I needed him and that's what parents do. As for rehearsing his death, I've been imagining it his whole life. And as horrible as I imagined it, imagining it is nothing like living it. The permanence of it is crushing. With each of his other hospitalizations, it was horrible and horrific, but it ended. He eventually stabilized and came home. There is no coming home. There is no going back. This is forever and all I want is for it to unwind itself. For him to stabilize and come home, so that he can begin healing, so that I can begin healing, so that our family can heal and we can keep living and looking forward to Thanksgiving and Christmas and birthdays and graduations. For now, in the face of the comments that don't make sense, I keep encouraging myself to hear what people mean and not what they say. Mother in Chiefhttps://www.blogger.com/profile/10096344221710006618noreply@blogger.comtag:blogger.com,1999:blog-9999144.post-5851813449980532512014-12-15T17:54:34.312-08:002014-12-15T17:54:34.312-08:00Most people with "healthy" kids are unab...Most people with "healthy" kids are unable to comprehend their child's sickness or death - it scares them too much. I remember friends asking about how I dealt with my son's heart surgery at 1 week old and praised me for being "strong." I didn't understand it because it was just what I had to do and it wasn't about me. Having had both my kids with life threatening issues and a boyfriend die young, I tend to "rehearse" their deaths. It's a practice that allows me to be less demanding, more thankful and better parent and person. I wonder however if parents of kids w/ more severe defects try to forget - my friends seem to do that for the sake of the child. I am thankful you continue to reflect because that is all you can do.Anonymoushttps://www.blogger.com/profile/02284821298754297548noreply@blogger.com