I wish from the bottom of my heart that no baby would ever be diagnosed with a fatal condition.
I wish from the bottom of my heart that I could take this away. I'm so sorry you have to walk this path.
I'll never forget the day we head the news our unborn son was going to die. There is nothing in life that can prepare you for that news. It's absolutely earth-shattering. All your hopes and dreams for your life and family are gone in the moment the words leave the doctor's mouth. Shock overwhelms you and you don't know what to do. Sadly, and most likely, they will offer you the option to terminate the pregnancy. Please know you do not have to make that choice. You have other options. You can make the loving and courageous choice to continue the pregnancy and give your baby all the love you can during his or her life.
You can do this.
I know, we've been there.
Our son, Samuel Evan, was diagnosed with a fatal condition called PUV at 15 weeks gestation. Our hearts were so broken. We loved and wanted him dearly. I know what it feels like. Somehow you make it through that appointment. Somehow you call loved ones to give them the horrible news. Somehow you keep going.
(If you would like to read our story, please go to The Love We Carry).
Some of the biggest questions that come after such a terrible diagnosis are: Why? Why us? Why now? What did we do/not do? What can we do to stop it/change the outcome? How is this possible? How can I do this?
There are going to be a lot of people who want to answer those questions for you. The truth is this: there may not be a reason at all. Believe me when I tell you, that is really, really hard to handle. If you're like me, you will roll those questions over and over in your mind until you feel like you're going to lose your mind. Give yourself some grace and be gentle with yourself. The reality is, these things sometimes just happen. I'm deeply sorry. it's unfair and wrong and you do not deserve it; not for one second.
If you've decided to carry your baby, you know that unrelenting love that beats inside you for your baby. The drive that says "I want to meet my baby. I want to love my baby for as long as possible. I want to say goodbye in the most peaceful way possible"
Please remember you are not alone. There are other families who have walked before you who are ready to help with love and understanding.
No one can do this for you. No one can completely understand your unique situation. But we will do our very best to be a place of help and comfort.
We will offer you support and encouragement when you feel like the pain will never end. We will listen to you, hurt with you, and help in any way we can.
Hopefully, you will find some amount of hope here. Believe me, I know how elusive hope can seem at times. I know there are times (days/weeks/months/years worth of times) that hope seems like nothing you will ever feel again. Hang on.
You can do this. You absolutely should not have to, and you definitely won't want to, but you can. I promise, it'll be worth it.
Unfortunately, people who mean well will say and do some very hurtful and insensitive things. I'm sorry. I've been there too. Try to remember they simply cannot understand the depths of pain a tragedy like this brings. They can't imagine how horrible it feels. They just won't get it. Surround yourself with people who love you and don't worry if you have to keep others at arms length. This is about you and what you need.
Please feel free to share your story here. Feel free to show emotions here. This place is for you.
All my love and wishes for courage and strength as you walk this heartbreaking road.
~RaeAnne
You can contact me anytime here.
To connect with other families facing the loss of a baby due to a fatal diagnosis, join one of the Private Groups listed on the main page.
You can also "like" the public page, here.
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All That Love Can Do
The title of this blog came from a card we received just after Samuel died. It reads:
Why? That's what we ask. The truth is, we may never be able to know for sure why. But we do know that there is no single "should have done" or "could have done" or "did" or "didn't do" that would have changed that why. All that love could do was done.
This is my hope for you. In the midst of all the pain and suffering that this journey will bring, you can look back on the time you had with your baby(ies) and say, "I did all I could". For me, this is about the only comfort I can take. I know for us, all our love could do was done.
2 comments:
Terminology often used to describe the outcome of a poor diagnosis of a child is "incompatible with life". Using those words are better used to describe a doctors beliefs about the diagnosis rather then the facts of what a family is facing. Doctors often force personal opinion onto families and try to convince them that ending the pregnancy is the best option. Because of the term "incompatible with life" families frequntly do not realize all they can gain from carrying a child to term. Carrying a baby can provide time spent with their child, when they realize how "compatible" with life their child may be. It can also provide a sense of peace for families facing a devistating loss as well, rather then regretting a decision that was made to end the pregnancy. Instead of using common terms doctors should lay out the reality of the situation on a patient to patient basis, inform them of all options and then let a family make their decision after all possible outcomes have been layed out. Doctors need to be a support for families facing the loss of a child, rather then the deciding voice.
I chose to carry my baby boy to term. He was diagnosed with Trisomy 13 when we were 16 weeks pregnant. They called him "incompatible with life" but inside of my belly, he had his life. I was determined to let him live out his life on his terms. I carried him for 36 wonderful weeks, and then he stayed with us for almost 6 days. He was held and loved on by many of his family members: his 5 brothers and 5 sisters,his grandma, his three aunts and his uncle and cousin, and of course by his mommy and daddy. It was so hard to say good-bye but I will never regret allowing him to live out his life. We got to meet him and he felt our love. He was so beautiful. I miss him so much. He was born on November 4, 2015 and he passed away November 9, 2015. We named him Aaron.
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