People keep asking me….how did you not know Goldie had anencephaly?
With a neuro tube defect that caused her skull and parts of her brain not to form, anencephaly is extremely easy to diagnose in early pregnancy during an ultrasound. In fact, I've only found one other woman (so far) who carried to term and had no idea there was a problem. When I was pregnant with my son Moses, we had a few unnecessary concerns through ultrasounds that brought with them mountains of fear we had to fight against. So this time around after praying about it, we chose the midwife/home birth route. The only ultrasound we had was at 18 weeks at a non-medical facility to simply find out the sex of the baby. They weren't looking for any medical problems—they were looking for gender.
And every day, I thank God that's all they found.
Because I was blissfully unaware of Goldie's condition, I was able to to enjoy every moment of my little girl growing inside of me, bonding with her, loving her–loving being her mommy for those glorious 9 months she had on this earth. There was no fear, no angst, no dread, no tears. I was able to go on being the best mother I could be for my son Moses, the best wife I could be for my Studhub, Lucas. I was able to travel the world speaking and ministering, coming home to write songs and be with family—doing everything I needed to do during pregnancy while enjoying every minute of our intimate mother/daughter relationship.
Knowing wouldn't have changed anything. We still would have prayed and blessed her spirit every night, believed for her wholeness, believed for a pain-free birth, and of course, I wouldn't have thought twice about carrying her to term. Most women are encouraged to abort, (in fact, statistics show that 90 percent of them do) given the information that anencephalic babies are blind, deaf, mute, and can feel no pain.
And I'd like to take a moment to say….what a load of absolute, total, pure garbage.
On many, many occasions while carrying Goldie, I had the opportunity to pray for people during times of ministry. And EVERY SINGLE TIME I would start praying, her little arms and legs kicked and banged as though she was attempting a jailbreak to get her hands on the person I was praying for! I'd just laugh watching her little limbs dancing under my skin, exclaiming “That's my Luca! My little healer!” And every time, she'd stop her movement the second I quit praying. If someone had their hand on my belly, she was going to kick. In fact, one night in a worship service, I finally had to ask my mother to take her hand off of the left side of my tummy where Goldie beat up against the exact point where her hand was–for a solid 10 minutes! If I was worshiping, she'd suddenly get active and kick along with the drums. If I would get up to use the loo in the night, she'd kick on my bladder. The girl was so aware, so present, so in tune.
So alive.
Up until 5 years ago, anencephalic babies were referred to as ‘monsters' in medical textbooks until a midwife fought to see the term changed. And most insurance providers still won't even cover a woman who chooses to carry to term, reinforcing many women's decision to abort. In many states, carrying an anencephalic baby to term is illegal (that's right….I said illegal). I was mortified when talking to several girls who found out their babies had anencephaly early into pregnancy, and how doctors immediately shamed and chastised them for their decision to carry life and not abort or induce early. One friend had to stop her doctor from referring to her son Eaton as ‘it,' and informed him that she had a SON in her womb and he would refer to him as ‘he' or she was leaving.
Now hear me out. I'm not trying to get in a debate about birth preferences, medical practices, or that my decision to forego medical ultrasounds is the ‘right' decision to make. I'm saying…..it was right for me. I'm simply grateful that I didn't know of her condition. I thank God for it every, single day. I had a hard pregnancy, but it was still one of my greatest treasures—those 9 months and 40 minutes I got to spend with my baby girl on this earth.
Without the dread of death. Without the fear of pain. Without the anguish of loss.
When you lose a child, women who have lost children come out of the woodwork. Each story is equally as painful, but in some ways, you don't feel so alone tucked inside this sandpaper cocoon called grief. One of the mothers I met through a friend after Goldie passed is a beautiful songwriter named Alisa Turner. She found out, as most mothers do, that her little London was anencephalic during her first medical ultrasound and wouldn't survive. And her beautiful song ‘Dear Death' has, on many occasions, brought me quickly to tears.
It's excruciating to watch her sing to death while carrying her son as he still lives in her womb—knowing that he won't survive. But even in the agony, this beautiful song from a mother to the death that will soon take her son—-it's a glimpse into the hope of eternity.
xx,
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Wow! Thanks for sharing and empowering women to choose life. As mothers we have the power to choose life for our children and no one (not even facts) should strip that away from us. I was also told to abort my son at 18weeks of pregnancy. We found out he was missing fingers on his right hand due to amniotic band syndrome. We chose to carry him to full term believing God for his healing. He was born w missing fingers & yes it was a shock to us then but God has been beyond GOOD and we love our lil boy and couldn’t imagine life w/o him. He’s a gift to us and everything he represents! So thank u once again for your transparency & really giving us perspective in your journey. Praying for u always! Xoxo -Gema (Miami)
THANK YOU! I was asked this very same thing when sharing your testimony. I am so glad that I answered as I did– Your heart, passion, and voice through this has been such an inspiring, amazing thing. Your ability to enjoy the life that she had while within you was not compromised due to the fact that you had your attention on her LIFE and not a “handicap”. We are to focus on life… in life, in death we are confident in the power of His great love! Prayers are being continued as you continue to walk through this in such a public arena… MUCH love.
I love you. You’re nothing short of amazing.
This is so good – there’s an article written by Dr. Peter Saunders called, “Twenty Reasons to Think Twice About Aborting a Baby With Anencephaly” that covered some of these tender truths too…
I was floored to read about illegality of carrying to term in some states – I’ve been googling now for an hour & can’t find anything… That info needs to be shared.. Any links?
Thank you so much for writing this. Your story is beautiful..
Hey Paige,
I got the info from my friend at http://www.championlegacy.org/founders/ where certain states are in the process of hopefully changing laws to help women carry to term. Up until just recently in Alabama, it was deemed unsafe for the mother to carry to term because of complications (sometimes, anencephalic babies won’t drop because they don’t have a skull), and I watched a video of a mother who had no choice but to induce at 20 weeks or be dropped by her insurance. That law was just recently changed, but many states have similar laws. There is an organization called ORGANize that is trying to help change laws for mothers who want to carry to term in order to donate the organs of their babies to other children in need.
Here’s a powerful story of a mother who was banned by Facebook for posting pictures of her anencephalic baby: http://www.lifenews.com/2014/03/03/remembering-grayson-anencephalic-baby-facebook-banned-whose-life-impacted-so-many/
Hopefully with more awareness, these laws can change and give mothers the right information to make educated decisions!!
xx
The way that you relentlessly mother little Luca from afar will change so many, many hearts… I know these laws shouldn’t surprise me, but they do. Seen, created for glory, intrinsically valuable. Each fragile life, a gift. Thank you for what you do…
I’ve often wondered if you knew or didn’t know about your sweet girls condition. Thank you for sharing. I’m so happy that you didn’t know and could enjoy that sweet precious time you had with her. You are ao brave to share your pain. May God bless you and your family.
If you have a moment do read the beautiful journey of parents who faced a very similar situation,,, Their third little girl, Hallie, would likely not be born alive and they prayed to just experience that.. She lived almost 5 days… Incredibly touching – their faith shines through in their blog: http://thelittlegreenfamily.blogspot.com/2011/06/our-baby-is-1-in-10000.html
WOW! your words are amazing to me. I have fallen in love with the music of Alisa Turner….blessings to you.
Your strength is incredible. Keep spreading your knowledge and faith! Even though I don’t comment on here a lot anymore, I really do love reading your posts. A lot of people say “what doesn’t kill you makes you stronger.” but you really live by those words. You never cease to amaze me.
I love your heart Christa!!!!! I love you!
My first son was born with several birth defects that were undetected despite several ultrasounds. He did survive and is doing well today, but for a while I was angry that we didn’t know, felt the technician didn’t do her job. I felt I could’ve prepared, but I soon realized, I probably would have been distraught with worry and those days of bliss with my husband celebrating our first pregnancy would have been totally different, full of worry and grieving. I too am thankful for not knowing. And very thankful for each day I get to spend with him. Thank you for sharing this, it reminds me to trust the Father and His beautiful love for us.
So blessed! Your words are so honest, so real and so inspiring!!! Thanks for sharing your heart!
In what states is it illegal? I googled it but could not find it. I need to know because I’m currently 14 weeks pregnant with my precious baby, who I just found out is anencephalic. I’m in such pain and fear, but I want what is best for my baby and I wish I felt sure the doctors will talk to me about it. I’m to go back to a second ultrasound to be sure, but the conversation a couple days ago was very open-and-shut about abortion being the only option I had. I was crying too hard to say anything or think that through or ask questions. So could someone tell me? I’m so sorry, and so touched, by Goldie’s story. Thank you for reminding me that it’s ok to love my baby.