Article about anencephaly

A friend shared this article and I thought it was very well written. It shares many reasons why a baby with anencephaly should not be aborted. Some of the points made really make you think and I hope that it can change the mind of even one person out there who views a baby with anencephaly as a baby who should be aborted. Babies with anencephaly may not live long but it is still a life worth living.

http://www.lifenews.com/2013/10/14/twenty-reasons-to-think-twice-about-aborting-a-baby-with-anencephaly

For those who decide that it is best for their family to terminate, there is no judgment. I only hope that those who decide this route do so for themselves and are not coerced in any way. Families have a right to make their own decisions for their baby with complete knowledge and without influence from anyone.

Day 12 ~ Capture Your Grief

Article: Have you read an article about grief that you would love to share with everyone? Maybe it is something from Still Standing Magazine or a blog post from your favorite blogger or writer. Please feel welcome to share who wrote the article and how the article resonated with you and also the direct link to the article if it is online.

I can’t really pinpoint just one article. I’ve read so many that the ones I would consider sharing I don’t remember what they are titled. I have read a lot of good articles on Still Standing Magazine, which centers on loss and infertility.

A breakthrough for Potter’s babies

I remember reading when Representative Jaime Herrera Beutler was told that her baby had a fatal diagnosis of Potter’s Syndrome and that her and her husband decided to carry to term. I was so glad that someone in the public eye had made that choice so that others can see that it is a valid option and that terminating is not the only choice despite what doctors may tell their patients.

An article was recently published that shared more about her baby’s birth and life. Her baby was born alive and breathing. She has been doing well for 2 weeks now. During her pregnancy, several amnioinfusion procedures were performed to allow for lung development. Since her baby’s birth, she has been receiving dialysis for her lack of kidneys.

This is great news for families who are expecting a baby with Potter’s Syndrome because they know that there is hope for their baby to live when before doctors gave them no hope.

On the other hand, this news is quite the blow to families who have already had a baby with Potter’s Syndrome. This blow is especially hard for families who asked for the very same things (amnioinfusion and dialysis) and were told no. They were told that it would not help their baby and their baby would not survive even if these procedures were performed. Now it is proven that with these treatments, babies with Potter’s Syndrome can survive. It is a very hard pill to swallow and my heart goes out to all the families, including my friends, who have had to deal with some very tough emotions and grief with this news.

To Jaime and her husband, congratulations on the birth of your little girl. She really is a miracle. I hope that from her story she will be an example to other doctors out there that these treatments do work. I hope that more doctors will be willing to try them and save babies with Potter’s Syndrome. I pray that she continues to do well and that eventually she gets the kidney transplant she needs.

To my friends and Potter’s families, I’m so sorry that you were not given the chance to even try to save your very loved and much wanted babies. It isn’t right and it’s ok to be angry and to grieve over this news. I know how I would feel if it were my Carleigh and I would feel devastated to know that I could have done something but was prevented in doing it. My prayers go out to you.

Why carry a dying child? A mother's perspective.

A mother's perspective, written by Teresa Streckfuss, mother to Benedict Oliver and Charlotte Mary.

Many of you may have wondered, "What's the point?"... or perhaps pitied us for 'having' to continue carrying a child who is not going to live for long... I understand these thoughts, because when my sister was carrying Thomas Walter (who had been diagnosed with anencephaly at 18 weeks and lived for 17 ½ hours after birth) I really didn't properly comprehend the whole situation. I knew it was the 'right' thing to do. I didn't question that I would have no other option if the same thing ever happened to me (although I knew it never would!) But I thought how awful it was to know for over four months that the child you are carrying is unable to live outside your womb.

Once he was born, I was able to hold my nephew and see him finally as a real person - a precious unique creation - I began to realise that there was a lot more to it than mere 'ethics'. When, much to my disbelief, my own baby, Benedict, was diagnosed with this same condition four years later - I was finally able to grasp it, although it has taken me a long time to be able to put my thoughts into words. It is only since Charlotte's diagnosis that I have found words that almost convey my feelings.

Some people think we carried Benedict and Charlotte to term because we don't agree with abortion, because we are Catholic, or perhaps because our nephew was carried to term after a fatal diagnosis. While these factors probably all played a part in our immediate refusal of the option to 'terminate', this is not what it's all about! It's about love! It's about our baby! It's not about some tragic, fatal medical condition - it's about our child. We do not possess more strength than other people. It's not because we can cope where others wouldn't. There is no way to avoid the sad fact that she cannot live long after birth with this condition, but causing Charlotte to die earlier will not stop this happening. Causing her to die earlier will only take from us the beautiful experience of knowing and loving her.

The tragedy is not the fact that we know our baby will die. The tragedy is that our baby will die. It is not nice to know for months beforehand, but it gives us a chance to appreciate a life so brief, and not to miss a moment.

The value of Thomas Walter, Benedict and Charlotte cannot be measured by the length of their lives - we don't apply this yardstick to adults, so why should we to babies? A baby is not a possession, an accessory to acquire. A baby is a gift, a new entity, a precious, individual soul loved by God. We are created for a purpose, there is a reason for our being here. Even if that reason is unclear to us most of the time, we are constantly affecting other people in our families, communities etc. Who knows what purpose can be fulfilled in 9 months and one day? I don't know, but God does. I do know that Benedict left a lasting impression on our family, he made us slow down, savour life, and treasure our other children even more. He made us realise that we cannot control or predict what will happen in the future, he made us rely on God. And how often are we given the opportunity to really give another person true unconditional love? Love that truly expects no return? It is a blessing to experience that kind of pure love!

So don't pity us for carrying a child we know will die. Carrying this beautiful person is an honour. Grieve for the fact that our baby will die. We wouldn't wish away the time we had with Benedict, and also this time we are now experiencing with Charlotte, just to save us the pain of losing them. I've always thought of it like this; if your 3 year old was diagnosed with untreatable, fatal cancer and had only 4 months to live; would you prefer the doctor kill your child straight away so that you didn't have to wait for his/her impending death? Or would you prefer to spend as much time as you could with your child and love him/her for as long as you had left?

Someone asked us after Benedict died, "Was it worth it?" Oh, YES! For the chance to hold him, and see him, and love him before letting him go... For the chance for our children to see that we would never stop loving them, regardless of their imperfections? For the chance to give him everything we could? Oh, YES! Love your children, and remember that they each have their own unique mission. Children are always and only a blessing from God - even if they don't stay very long...

Can I complain a bit!?

First, if you're wondering why I haven't been posting it is because Kyndra has been sick and I haven't had much time to be on the computer when I'm at home. I believe she caught what Anthony had and she's had a pretty rough weekend but seems to be doing much better. Her chest is still congested some but the fever has gone down. I was hoping she'd be able to get over it without me having to take her to the doctor and it looks like she is. I think she was starting to come down with it last Wed when I had her 12 month checkup and when she got her shots it probably overwhelmed her immune system and it came on pretty quick after that. I already had to take a few days off because of the pink eye she had and now this. I have no family down here to watch her so I have to take off work. I wouldn't mind taking the time off except that it is taking away from my PTO and sick time that I've accumulated so far and that I was trying to save for after Carleigh was born. I had about 5 weeks saved up and now I think I'm below 3 weeks. I really hate that. I wish I had more time. :( I am glad that I will get a week of bereavement that is not taken out of my own time but I still wish I had more. I don't know as of yet how much time I will be taking off but I do know that I can only take off what I have saved up. I can't be off without getting paid.

Maternity leave really sucks in this country. You know, in some countries they get a whole year off! Seriously! Just look at this http://www.msnbc.msn.com/id/8715778/. It's just so pathetic that we're supposed to be one of the more advanced countries in this world yet we don't give mothers they time off they need and deserve.