This post has taken me longer to write than any other. It’s in three big chunks, and if you’re a guy, you’ll probably want to skip over the birth story and on to the second section labeled “birthmarks”. 😉
This story is certainly not the simple birth story I expected to write. This story is still unfolding and I promise to write an update soon. Our family is already so thankful for the outpouring of love and prayers we’ve begun to receive!
(For an UPDATE on what we found out about our little guy, fast forward a year and read this.)
But let me back up and tell you about how “Lovebug” was born in the first place…
I’m not going to sugarcoat it. The last half of this pregnancy has been ROUGH. My hips have refused to work, leaving me dependent on canes, walkers, and the kindness of others.
Our birth center of choice hadn’t actually opened up yet, despite six months of promises. Their other location was available, but too far away to guarantee I’d make it there in time. (Hello, local news team! Why yes, I did just have this baby along the side of the road!)
I was stressed and in pain. There were so many unknowns.
Even in pregnancy I called Lovebug my most cooperative baby. He and I seemed to have a connection.
Every time I’d think to worry because I hadn’t felt him kick in a while, he’d move around within 30 seconds! Every. single. time.
He was every bit as cooperative in birth.
He waited to come until the birth center had been open two days. I had been saying all along that my best guess for his birthday would be the 20th, since my older two children had been born on Fridays closest to their due date. When I was feeling “off” on Friday morning, I asked my husband to stay home from work. When my soon-to-be middle child refused to nap, I asked my mom to take the older two boys to her house so I could get some sleep.
I’d been SO nervous about having a roadside baby because I only had eight minutes to spare with my last delivery. So I was hoping this time that the start of labor would be OBVIOUS.
Lovebug was cooperative again!
One swift kick woke me from my nap, with my water breaking and contractions starting immediately.
It was perfect. Husband was already home. Brothers were already at the grandparents. I had just had a nap!
The gifts just kept coming.
On our way to the birth center, the on-call midwife made contact with us. I was shocked to hear the voice of the same midwife who had delivered Lumpy, my absolute favorite! She wasn’t even supposed to work at the new location, but because of all the special accommodation for me, she happened to be our gal.
I started to cry happy tears right there. It was such a sign that God was right there with me, easing my fears.
When we arrived at the birth center, we quickly settled in. However, I was none too pleased when I found out I was only 3cm dilated. (My first birth had taken over 28 hrs and forced me to face my fear of death!)
At that point, I hissed to my husband, “Why do I keep trying this stupid natural birth thing!”
10-15 minutes later, they were checking my progress again. Contractions were nearly a minute and a half long and barely two minutes apart (hardly any down time). I was at 7cm and already wanting to push.
I didn’t realize that a water birth was an option with my water breaking and all, but I gladly accepted the offer.
As I climbed into the tub as large as my bed, I had a contraction and settled in to start pushing. Unfortunately, the tub was so massive that my feet couldn’t reach the far side and I felt like I could slip under and drown! Andy leaned over the expanse, holding me under the arm pits.
Pushing feels good in a awful sort of way. It’s the most primal I have ever felt. The growling screams coming out of my throat scared even me!
About three contractions and his head was out. In my confusion, I panicked at the thought of his head underwater. But everyone assured me to wait for the next contraction to push his shoulders out. That hurt worse than crowning. He had come so fast that he presented transverse, meaning sideways! So those shoulders pretty much wrecked my tailbone, ouch!
The whole labor was one hour and twenty minutes, start to finish. Crazy!
I’ll always remember the weight and warmth of him as they placed my son on my chest. Perfect.
After climbing out of the tub and flopping onto the nice warm bed, I started to inspect my new child up close. He looked liked he’d been in a bar fight. But all my boys looked like that moments after birth. It wasn’t until about 15 minutes later that my midwife first mentioned the “bruise” I saw on his eyelid and forehead.
“It could be a birthmark. We’ll know soon.”
I was incredulous. My son’s flawless, lady!
But soon after, she confirmed that our little boy has a permanent birthmark covering a good chunk of his face.
I felt so shallow, but I cried anyway.
How would this affect him? The phrase, “A face only a Mother could love.” kept taunting me.
Nobody wants their child to be judged or excluded before they’re even known and that was my huge worry.
Or what I THOUGHT was my huge worry.
A couple days passed and then I received a random Facebook message that rocked my world.
A gal I barely know, told me that because of the type and location of my boy’s birthmark, he could be at risk for glaucoma and a syndrome called Sturge Weber.
Good ole Google told me a bit about SWS. I saw words jumping off the page like “seizures”, “mental retardation”, “physical handicaps”, and “progressive brain atrophy”, each phrase a new icy finger of terror gripping my heart.
I started sobbing uncontrollably as I told my husband the horrifying possibilities. That night was one of the worst nights of sleep I’ve ever gotten, and trust me, I’ve had some bad ones! My mind would not shut off. I honestly contemplated taking him to the ER in the middle of the night to get a brain scan done. I could not stand the thought of not knowing.
So does my precious son have Sturge Weber Syndrome?
I don’t know yet.
Why write this post now, pulling you into my world of unknowns? I debated for a long time about when to write this post, before or after test results came back.
But this story, our story, isn’t really about test results. It’s about a covenant.
Not exactly a word used much in today’s culture. But it’s at the forefront of my mind right now.
I’ve always heard that God has made promises to us. But I’d always feared taking Scripture out of context, applying words to myself that were really meant for the original audience of the Bible.
I found myself believing that most of God’s promises had loopholes and fine print. I couldn’t really trust and rely on much of anything beyond basic salvation.
Then I started studying covenants.
The God of the Universe is in a covenant with me. One that He initiated. One that He has been steering all of history towards. One that was sealed with His blood. One that He is incapable of breaking. One that I can’t do anything to screw up or make void.
And what are the terms of this covenant?
I bring my filthy rags, He brings flawless righteousness. (Isaiah 64:6)
I trade a sin riddled heart, He gives me His. (Jeremiah 17:9)
I die to myself, He lives life abundantly in me. (Galatians 2:20)
The external becomes internal. The impossible becomes reality. (Jeremiah 31:33)
Forgiveness, Life, and God’s unrelenting favor (Jeremiah 32:41) because He has united Himself to me in this glorious covenant.
I can’t possibly pack all that God has promised to me into a couple paragraphs. But the gist of it is this.
He wants to shower me with good, real good. And He’s faithful and more than capable to do it.
It’s as good as done.
So where does my son play into all of this?
It’ll be easy to see God’s goodness if my son doesn’t have Sturge Weber, and we pray to that end.
But if he does…
God knows all and has everything under His authority. He has also PROMISED to do nothing but good to me. It might be incredibly painful, but it will be best. Having a son with SWS will be the best gift, the better gift.
I’m a parent. Every day my children and I disagree on the definition of “good”. They think it’s mounds of candy and never-ending TV. I have slightly more perspective. 🙂
Sometimes I insist they go through something hard; something that can’t possibly see the benefit of.
God may be asking me to do something similar. I don’t know.
So as I wait, I can truly find a “peace that surpasses all understanding”. Not because I have faith in a positive outcome, but because I have faith in the covenant God.
(Welp, it’s been a year. Read this to get the update!)
Wow, what an amazing birth story! So glad to hear it went smoothly. It is so hard to trust God fully with our children, but it is SO good when we do. Praying that you find out soon and that, no matter the results, you are able to continue to trust that God does have your best, and your son’s best, in mind.
Thanks so much Esther!
Looks more like a Port Wine stain or maybe a hemaglob(?) birthmark which usually goes away in about 3 years.
It IS a Port Wine Stain which is quite permanent though it may fade. Laser treatments can lessen their appearance as well. Of course our major concern is not his looks but the risk of developing Sturge Weber syndrome and the effects it will have on his brain.
What an incredible birth story! Your baby boy is beautiful. I love your covenant and I hope everything will be okay with your son. You have my thoughts and prayers.
I really appreciate that Tricia!
This is so beautiful. I’m not close to parenthood by any stretch of the imagination, but I love this. First of all, your baby is so precious and beautiful and perfect. Second, I so appreciate your honesty and vulnerability in writing this. I know that sharing your heart to the vast internet world can be hard at times, but know that God is using it to inspire and encourage! And okay, I’m just starting to ramble at this point, but the ending with all the “ifs” and God’s promises was awesome. Much love to you and your sweet baby!
Aw! Thanks for the encouragement! We writers need that! Hope it’s a blessing to many!
Tina coakley says
Julie, my dear friend! You always hage been a beautiful writer. But this is more than beautiful words it’s a beautiful heart. I love you and I love Lovebug (I want to meet him in person one day) your story is inspiring and I know you have made jesus glad by proclaiming him in the story. He is the author of our story. And you were bold enough to write it on paper. It’s beautiful Julie! You have a beautiful family. And I am continuing to prayer for Lovebug and all the doctors visits and all the stress of waiting in between visits (that’s harder than the visit itself). Love you Jules and I wish I give you a big hug. *internet hug*
Aw Tiner! I love you too! You’re prayers me oh so much!
Christina @There's Just One Mommy says
What a beautifully written post. Thank you for sharing it with us. I will be praying for you and your little one. God does wonderful things, and his blessings are many. May he give you strength for the road ahead.
I really appreciate it!
I’ve been where you are. It was not the face but my last baby had a port wine stain all down the back of one of her legs.It covered 80% of the leg. I went the route of getting it check out and we did do the laser treatments for her leg. I’m amazed at the difference it made on it. I understand all the medical stuff and questions that get asked. You are brave for writing about it. It is amazing what we can do with the lords help.
My daughter is almost 6 now and it is amazing and I love her no matter what she looks like. She gets questions, but just remember to raise your child how you want and it will all be okay.
Thank you for the encouragement! Once we have the MRI done and find out if his brain is healthy, we can move on to the birthmark!
Thank you for sharing your heart. I have a “not perfect” child as well. At times I still cry that he is not perfect and that he is judged and that things aren’t “normal”, but he is God’s perfect gift to me. Many prayers and many blessings to you and your family.
Thank you so much for sharing. Yes! God’s perfect gift! He knows what he’s doing!
First, I have to say that your baby boy is darling. You don’t have to worry about him having a “face only a mother could love.” He is beautiful and precious.
Second, your faith in and reliance on God are inspiring. Your section on covenant reminds me that God is good and has a similar covenant with me.
Thank you for being vulnerable and honest. It takes courage to do that. But, when you do, you inspire others to do the same. So, thank you, Julie.
He IS adorable, isn’t he! Thank you for the encouragement! So glad others are being blessed. I feel it would be such a waste to hide this mixture of pain and fear and faith, that’s why I share.
He is the perfect ray of sunshine, God Bless you and yours, and a little hug for little one.
What an amazing birth story! Your story was shared in a Mommy group I’m in and just wanted to let you know that I am praying for you! My son was born with a port wine stain that covers the right side of his forehead and extends about half way back on the top of his head. I remember all the fears and uncertainty that we faced right when he was born and am so thankful for our Great God and peace and comfort he can give. Thankfully my son doesn’t have Sturgeon Weber and he’s an active four year old in K4 with lots of friends(one of this mamas biggest fears). I just want to encourage you and let you know that I’ll be praying for you as another mama that is familiar with the birthmark world. 🙂 I know you don’t know me, but if you have any questions please feel free to email me. I remember when my son was first born and I had so many questions I wanted to badly to be able to talk to others that have had this type of birthmark(thankfully my path has crossed with many wonderful people since then that have been a tremendous help!). Many blessings to you and your sweet family!
So glad you found me! And so glad your son is doing so well. That gives me lots of hope!
I absolutely loved this blog post! I have a port wine stain birthmark covering a large section of my face too. I just want to say how brave and amazing you are. I recently started a blog on birthmarks, how parents can help their children through the birthmark journey. I would love for you to guest post sometime if you wanted to?
My blog is http://www.beautifullymarked.com.
Your son is so handsome and I can’t wait to follow his story ❤️
Hi Rachel! Thanks so much for writing! I’d LOVE to guest post for you some day! Hit me up with an email!
Our son was born last Oct. With port wine stain covering the majority of his face, body and scalp. We know how much the unknown can try and get the best of you. I was a mess emotionally the first month of his life since we were also told he was at risk for sturge Weber and glaucoma. I couldn’t sleep, eat or hardly drink water because my anxiety and worry had consumed me. Our baby had an MRI of the whole body when he was 1 month old. His brain did not show any signs of SWS at this time , however they told us that doesn’t mean it cannot show up down the road. His eyes have been checked out twice so far and we have received great results, thanks to God. We have great family and friends who have continued to pray for our baby and our family and by the grace of God we are all doing well and living life to the fullest again. Taking it one day at a time and just enjoying each day and each smile that our baby gives us and the look of certainty he gives us that no matter what he is going to be okay. We still feel as if we are lacking lots of answers at this point but we are trying to be patient and letting God guide us through this journey called life and trusting in his plan. As others have told you, please feel free to email me if you ever want to talk more. Our son is almost 6 months old. He has already had 2 laser treatments on his face. I will be praying for your son and family that you will get some answers soon. God bless you all!
Jill, thank you thank you thank you for writing! Wonderful to meet another parent going down a similar road. We’ve had one brain MRI, 3 eye docs and the first laser treatment is this month. I’ll definitely shoot you an email! Thanks! Many prayers for our boys!
Hi Julie, beautiful story. My son was born last May with a facial PWS. Its bigger but on the cheek. I heard unless the MRI is done after the 1 year will have to be repeated. I felt every word of you as mine, exact same emotions.
Thanks for commenting! My son is two now and LOTS has changed! He was diagnosed with SWS at a year old, but turns out they were wrong! You can read it all here: https://www.mymundaneandmiraculouslife.com/prone-wander-faith-fear-brain-surgery/ Praying your son has NO complications and that God uses this waiting time in your life for big things!
Hi Julie, my son was born on 4th of March in Singapore with a similar birthmark as your son. We are considering if we should continue to do MRI for brain, he was visited by eye doctor and the results shows normal by now.
I have read your story i can understand your feeling as a mother.Can i follow up with you about the treatment even we are in different country? My email address is wendy040316 @gmail.com,can you email me?
Yes! Emailing you right now!
Michelle Murphy says
My son William was born on April 22nd this year with a birthmark almost identical to your son’s. We are waiting on a referral now for an eye doctor. Honestly, I’m scared, and I have no idea what to be prepared for. Google was not made for anxious post partum mamas like me. Is there any way we could chat via email? I would be very grateful!
You bet! I know those fears too well. Emailing you now.
My baby has/had a strawberry birthmark (hemangioma) that covered a quarter of his face and the doctors scared us with face syndrome. It was terrifying to watch my baby go through all the tests. Luckily he is fine now and he will never know. I’m still recovering. My heart is with you and whatever stage of the journey you are at. This shit is hard.
Grrr.. excuse me… auto correct kills me… PHACE Syndrome. (Not face) …
hey juile my daughter was born with mark on her eye that looks like make it the docs say it a birthmark and should go away but I hope it don’t it makes her look nice and more different then anyone eles
Thank you for writing this! We have an appointment with a pediatric neurologist in a month to examine our son’s similar birthmark and I am just as nervous. Feels good to know we aren’t alone ❤️
Hi Bree! Hope your appointment goes well. This is quite the crazy ride we’re on! Prayers for your sweet son!
This is a beautiful article and one I needed to read today. My 6 month old son was born with a port wine stain as well. I remember feeling the same way as you did, And the GOOGLE!!! ugh! As a first time mom, this was a whole new level of worrying and fear. My little guy has seen many doctors… a neurologist, ophthalmologist, vascular abnormalities specialists, etc. We went in for his first MRI at 3 months and was relieved to find out everything was normal. We go for another MRI at 12 months because they say that the syndrome can have a delayed effect on the brain, but no later than 12 months. We start laser treatments next month. This is a rough journey to be on and I am glad there are other moms out there that feel the same way I do and I appreciate how honest you are in sharing your experience. Through lots of prayer, we too will get through this!
Thank Ashley, feel free to write me any time. It’s a scary journey for sure. Our little one was diagnosed recently with Sturge Weber but now it seems like he may not have that but something else entirely. It’s so crazy and confusing, but God has been good to us through it all!
Hi! I randomly went to your site and I amdo glad I did! Reading about your son’s diagnosis broke my heart but I can definitely relate. The way God has spoken to your life about this, really encouraged me. I just had my 2nd baby December 3, 2016. My pregnancy wasn’t perfect but I had no clue we would get the news we did when he was born. When my son Luke was born, they discovered a heart murmur. But after taking an oxygen test they were considerately low. They took an echo test. He was born with a heart defect. The Nicu wanted to send him to the children’s hospital in Indy. It was so traumatic for a mom to be separated from her newborn son for hours in a helicopter. Immediately I had to learn to let go of him and trust God. Seeing him need a breathing tube and seeing wires in him wasn’t in my plans. I wanted to nurse him badly. …. then they did a heart cath on him. Then genetics wanted to take tests on him. Another thing that took our breath away and made our heart skip a beat…, he has a gene duplication. It’s rare and not enough studies on it but he could be a completely normal baby or have delays in learning, development, speech delays, low muscle tone, seizures, mental illnesses. All I could do is cry to my husband. After all that I have cried almost everyday to my husband and to God. I prayed over this sweet baby throughout my whole pregnancy against these things.. I still grieve in my heart at times. Not knowing what kind of quality of life he will have. The genetics dr doesn’t want to put a cap on him since it’s so broad. So all I can do is trust in the Lord and his faithfulness. Believe that God has bigger plans than I do for him. I can even believe God can heal him from this. Just know you aren’t alone in this as a mom. I’m new at this too. He’s meeting his milestones and he is just the sweetest blessing. A song I recently heard by Laura Story is called Open Hands has really ministered to my heart to surrender this totally to God when I get anxious about his future. God bless you! My email address is email@example.com if you ever need to talk to another Christian mom.
Oh Amanda, I’m so sorry you’ve been going through this heartache. I know that God is going to bless you so immensely through Luke’s life. I will definitely check out that song! Sending you an email now, Julie
I just wanted to share my story. I know it may not be ideal right now, but in the future maybe you can look into it as an option because it’s sure helped me.
I have a port wine birthmark on the side of my face, I never received treatment when I was younger so it was quite dark and as I got older I starting looking into other options. I stumbled upon the Basma Hameed Clinic and was shocked to see their work.
I went in for my initial consultation and decided to move forward with the micropigmentation procedure to help me camouflage the birthmark since I’m clearly no makeup artist when it comes time to covering it. I’m now at my 5th session and I cannot believe the results, I’m so incredibly happy I looked into this and I figured I should spread the word!
Hello, your story hit home! You sound just like my mother when she gave birth to me. I too have a port wine birth mark at the corner of my left eye and across my left cheek. My mother told me how much she cried when she saw I had a birth mark. The doctors also sent fear shivering down my parents back informing them that I may be headed to a life time of seizures and other complications. I’m 31 years old and am happy to inform you that my birthmark hasn’t given me any health complications!! Yes I did get made fun of a little during my elementary school days, as we know, kids can be cruel. But, after some time the other kids kind of forgot that I had a birthmark and just saw me:). I remember entering grade. 8 and one of the the children that had made fun of my years before said, “You know? I forget you even have it!” I’ve grown to love my birth mark! My parents always taught me that it is what makes me unique, and I take pride in that! I never cover it up, or feel the need to. Quite frankly, and can’t imagine my face without it! Sending tons of love and positive energy your sons way!
Lauren, thank you so much for sharing! I LOVE hearing from others who are further down the road! My son DOES have some brain involvement, but it’s not Sturge Weber so we’re crazy thankful! In fact, without the birthmark, we never would have known the risk. His birthmark in a round about way, may end up saving his life!
Thank you for your post, my son and I had a very similar after birth story and it has been both a beautiful time and filled with waves of fear and anxiety. I take it one day at a time and I also have my faith and husband. My sons birthmark is very similar to your sons, he is beautiful. God bless
Hello, thank you so much for sharing your story. I see it has now been a few years but I did want to follow up and possibly get to know a little about the SWS diagnosis you received . My son is 5 months and has a port wine stain. He had an EEG done as the MRI was not the best option per his doctor, with him being so little. We haven’t received the results just yet. Is it possible we can get in contact? I’d love to know how your boys are doing now as well.
Hope to hear from you soon. Thanks