Everything I know....I learned from Bennett-Chadlen.....

Saturday, June 23, 2007

Everything I know....I learned from Bennett-Chadlen..... Current mood: restless Category: Life As many of you already know.....my precious ^Angel^Bennett-Chadlen was born with a couple of rare conditions.....Trisomy 13....also known as Patau Syndrome.....&.....Congenital Diaphragmatic Hernia...or CDH for short. My life's goal is to continue to raise awareness for these unfortunate and unpreventable circumstances of life. Our afflicted babies all deserve a chance to live. Some of the symptoms are treatable......sometimes all that can be done is just provide comfort for the baby..........and parents. In my mind..... No one is medically futile, until you have tried everything that can be done......and nothing works. Too often the medical professionals out there provide little support to expecting parents. The data and research information available for many of the trisomy conditions is so outdated and unfair to the medical providers and affected babies. Termination is often pushed on expecting parents, resulting in a deep and never ending heartache for many years to come. My heart goes out to everyone, regardless of how or when you lost your precious babe. These lives were all wanted and loved. No one has the right to pass judgement on anyone else, regardless of what you think you would do in a similar situation. Unless you've been there....you will never know. Sadly, these 2 conditions.....and similar chromosomal abnormalities and birth defects.....are too often fatal. BUT......I have not been in contact with a family yet that regrets having their precious angel in their lives. It is so heartbreaking to find out that the life you are looking forward to creating with your new loved one, is possibly going to be cut short.......or may be quite different than the life you imagined it was going to be. Bennett-Chadlen was such a HUGE SURPRISE to me and his dad. I can't speak for his dad......but I really, really wanted our baby. I had planned on having a partial hysterectomy last fall, which of course would have prevented me from having any more children ever. It was a sad and difficult decision to make, but I was certain that I was finished with the baby business......and for health reasons I thought it was best to not have any more. Previous pregnancies, deliveries, and recovery times were very difficult for me. I required a lengthy period of time to recover, and suffered side effects of childbearing that I won't get into here. Trust me....these were serious predicaments that I did NOT want a recurrence of. Plus.....I was beginning a new phase of my life......the life of a near middle-aged divorcee. I truly figured that was it for me. I had already spent 4 yrs of complete celibacy......and pretty much figured that I would never meet anyone worthwhile enough to bother with.....let alone have a another child with. That would have required too much commitment that I was not willing to make ever again. Well, sometimes life has a strange way of working out.....despite our best efforts to prevent certain circumstances. I was 18 weeks into my pregnancy when I found out that Bennett-Chadlen was going to be a boy.....and that he had trisomy 13......which meant that he had an extra chromosome number 13 throughout each and every cell in his entire body. Trisomy 13 can occur in any pregnancy......regardless of the mother's or father's age. This condition occurs at the moment of conception......and can be caused by the sperm or the egg. In rare circumstances this condition is traceable to either parent if it is a genetic condition....meaning handed down through either parent. In our case......it was a totally random occurance......and there was no telling which one of us donated this extra chromosome to him. It could have been me....it could have been his dad. We will never know. The chances of this occurring again is very rare.....as rare as it was for it to have occurred in the first place. More information about Trisomy 13/Patau Syndrome can be found here: http://livingwithtrisomy13.org/memoriesofbennett.htm Bennett-Chadlen was born on March 29, 2007.....just 12 weeks and 2 days ago. He was full-term, 2 days passed his due date of March 27th. His outward appearance was beautiful....as are all babies in my eyes.....but he did not show any physical tell-tale signs of Trisomy 13....besides the extra digits on each hand and foot. He has the cutest little pinky toes ever.....they look just like they belong there. On each hand he has the tiniest, barely attached extra pinky finger....complete with knuckles and fingernails. We absolutely adore those unique little features. He is an original! At 7 months gestation I received results of an MRI which diagnosed Bennett-Chadlen with a non-severe CDH. His lungs appeared to be developing quite nicely.......and were seen functioning perfectly in all subsequent ultrasound tests performed up until the day before he was born. Following birth he was examined again by x-rays and ultrasounds....and it appeared that he did not have a "hole" through his diaphragm at all....only a floppy muscle which had allowed his stomach to protrude enough through to the chest cavity to make it appear that it was a true CDH. He was not going to require surgical repair for his....unless in time it got worse. Rarely the diaphragm muscle is so floppy that it does allow some of the abdominal organs to move up into the chest.....appearing that the organs are enclosed in a pouch. This does require surgical repair, the same as a "hole" needs to be repaired, and can affect the developing lungs in the same way. More information about CDH can be found at this link: CDH info Through my research I have found so many different medical issues that babies may be born with....the possibilities almost seem endless. There are a variety of heart defects, brain defects, kidney, liver, digestive defects....skeletal defects......many different genetic conditions......and a myriad of chromosome abnormalities. We all should have 46 chromosomes......13 from our mother, 13 from our father. Occasionally one parent may donate an extra chromosome....sometimes only part of an extra chromosome.....sometimes the extra chromosome is attached to another one......sometimes part of the chromosome is missing......or sometimes the entire chromosome is missing.... Keep in mind that can be caused by either parent. Just because us moms get to carry the baby, does NOT mean we are always responsible. You see......it is complicated. The true MIRACLE is that any babies are born healthy... People need to embrace what they are given, regardless of the package it comes in. Life is precious.......embrace it.........even through the difficult times. If you know someone that is expecting a baby with a birth defect, or know someone who has a child born with a birth defect....surviving or an angel.....please understand that it is often no one's fault. Love and support those parents. Allow those parents to give their precious ones life.....if that is what they want to do. Encourage it.......it is so worthwhile. Yes, it is difficult to endure. The long agonizing days, not knowing what the future holds. Is it life......is it life after death? No one should ever look at my baby and believe that he never should have been allowed to be born. Don't turn away from grieving parents. We hurt....we feel.....we ache....but are still human.......different than we will ever be again. Knowing the prognosis ahead of time does not make it easier to deal with when the time comes for our little blessed ones to leave us. The bonding of the 9 months creates such an attachment.....the difference being that we don't get to create those memories afterwards.....as long as we would like to.....in the way that we would like to. Sometimes angels are born to us...... Sometimes we get seconds, minutes, hours, days.........weeks, months.....or maybe only a year or two. More if we are lucky. We got 8 glorious days.....days that his father and I wouldn't trade for anything in the world....except of course more time.....and a miraculous healing for our precious boy. Bennett-Chadlen.........we are so proud of you......... and I will never let anyone forget it. I love you sweetie-pie......with all my heart and soul.....