What is a cystic hygroma?

This is part 4 in our baby’s story. Make sure you read:

Part 1 – The moment every parent dreads

Part 2 – Blessed be His name

Part 3 – I’ll take cystic hygroma for 100, please.

So that’s the question. What is a cystic hygroma?

That question is what pushed my husband and I do research. And research we did. We researched for hours. We looked online, we consulted other experts. What we have found is slightly different from the happy rainbow picture from yesterday.

Here is what we know:

This is an abnormality. It is also very rare.

Cystic hygromas found in the womb usually result in the mother aborting their baby. Usually, this is because that is what the doctor recommends. (WHAT?!!)

If you are here because your little one has been recently diagnosed with a cystic hygroma or lymphatic malformation, please keep following along. This news is hard, but it does NOT mean your only option is abortion. I have a feeling there is much more to our story, so stick with us for a while before making that choice.

This growth might still be a sign of a chromosomal problem with our baby. It also might be a sign of our baby having other health problems such as heart or breathing issues.

Cystic Hygromas don’t usually go away on their own, but it’s possible.

We are most likely going to need a LOT of doctors. ENTs, Pediatric surgeons, neonatologists, interventional radiologist and much more. And those are just the people in the delivery room!

What we don’t know:

How our story will end.

But – at least we know the One who writes our story.

happyfamily

Clueless, but happy parents of a very unhappy Gracie-girl!

What can you do:

I know a lot of you reading are wondering what you can do to help. You might know us personally, or you might just know us from this computer screen. You might have someone in your life who is going through a trial such as this one, it might even be you. So, let’s talk about practical help.

What we need are your prayers. More than anything else, that is what we need. Here is our current prayer:

Pray that God would do a miracle in the life of this sweet baby, that He would choose to completely heal this child.

Pray for wisdom for decisions. Decisions on how to have this baby, decisions on where to have this baby, decisions about gathering a team of doctors and specialists.

Pray for our hearts to be prepared for whatever He has for us.

Pray that above all else, God would be glorified in the midst of this.

Pray whatever else the Lord leads you to pray!

What else? We need your love and support. Sometimes, the best way to show that is just be with us. Don’t offer advice. Don’t offer great theological expressions. Don’t tell us why this might be happening. Just sit and be.

babyfeet

Thank you for walking this path with us!

Our heart is heavy for what the future holds, but light over the fact that we know who holds our future.

God will sustain us. He already has. We still know there is a very real possibility that our baby could die or be deformed for the rest of his or her’s precious life. However, nothing will stop us from loving this baby with all we have.

Thank you for your support already. It has been phenomenal. From emails to Facebook comments and even comments on this blog. You have encouraged and inspired us.

Tomorrow, we have our next appointment. We have somewhere around a million questions to ask. I’ve been told this doctor doesn’t sugar coat things. Thank goodness, I’ve had enough sugar, I want to know the truth of what we are dealing with.

Our future isn't certain, it never is. Especially, in the face of hard news. Yet, our story isn't over. Click to read more about God's sustaining power in times of trial.

More updates to come, as soon as I can.

 



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7 comments

  1. Heidi Zapolski says:

    I have been where you are but my son had a different condition. I will be praying for you with empathy for the challenges ahead. It’s always a difficult road but far easier when you trust in the One.

  2. Hannah @Supermommy!...Or Not says:

    While my situation is very different from yours, a lot of the feelings are the same. My son turned one last week and is medically complex with a feeding tube. He seemed healthy when he was born, but things quickly deteriorated and the last year has been incredibly rough and heartbreaking for my family.
    I just wanted to let you know that I’m praying and in awe of your faith and peace about this. No matter what happens, your little one is blessed beyond measure to be a part of your family. Caring for a child with any kind of medical problems or special needs is rough, but you are already equipped with the tools and attitude you need to make it through this time.
    Hannah @Supermommy!…Or Not recently posted…Little Dude – 12 Months

    • Tales of Beauty for Ashes says:

      Hannah, Thank you so much for stopping by. I can’t believe how hard your trial has been AND how heartbreaking. Praying for your family too, as God has a plan for both of us in the midst of trials. How amazing that He draws nearer to us in these times of heartache.

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