What to Expect When You are Expecting A Baby with a Cystic Hygroma…

Please excuse my cheesy attempt for a blog title…Bennett and I watched What to  Expect When You are Expecting just a few days before we found out the news about our little one–and I can say that these past 11 weeks have been nothing like the movies! 🙂

Thursday cannot get here soon enough! I was doing pretty good these past few weeks staying busy and distracted, but last night sleep took awhile to come and all I could think about is what is going on with our precious baby. The statistics are daunting. 70% chance of losing this baby before first trimester, 40% after the first trimester, 85% chance of this baby being born with a disability and a mere 15% chance of it being healthy.

But as a dear relative told me- Our God is not a God that follows statistics and I take comfort in that.

There are three different scenarios that we will face when we go to our appointment on Thursday:

1) Complete and total resolution of the cystic hygroma! This is our plea and prayer that our baby will be completely healed. This is less likely according to our doctor, but she has seen it happen and I have had several people tell me that their babies were diagnosed but within a few weeks the hygroma resolved on its own.

2) The cystic hygroma is still there. If this is the case, they will do a Harmony Prenatal DNA test. It is a non-invasive blood test to test for several chromosomal abnormalities which include:

Trisomy 21: Down Syndrome.

Trisomy 18 and 13: Both have a high risk of losing baby in utero, and if baby is born will have severe heart defects and life span is extremely short.

Turners: Affects girls only. Short stature, physical deformities, learning disabilities.

*The ‘perk’ to having this test done is we will be able to find out early if we are having a boy or a girl 🙂

If this test comes back negative, more testing will be done to test for  Penashokier, Noonan and Roberts Syndrome:

Penashokier: Growth problems, underdeveloped lungs,  facial abnormalities, high chance of losing baby in utero or shortly after birth

Noonan: Unusual facial characteristics, short stature, heart defects, other physical problems and possible developmental delays.

Roberts: Characterized by limb and facial abnormalities, slow growth, mild to severe intellectual impairment occurs in half of all people with Roberts syndrome. This condition has been a particular one of interest to Bennett and I and our family as we have a nephew who has similar symptoms of Roberts but a official diagnosis has not been given yet- but he is such a wonderful baby and we would be blessed to have a child like him! Of course, we are wondering if it is genetic but it is too early to tell at this point until we have further testing done with our baby.

3) Our baby has passed on to be with Jesus. As hard as it is to type those words, I must realize that this could be what we face come this Thursday. If that is the case, a D&C (surgery) will most likely be needed. I think of Job and Paul in the Bible- how they asked God to deliver them from their trials- but they weren’t delivered in the way they had hoped. This is a reality but over these past few weeks the Lord has truly surrounded me with His love and I know even if this happens- He is still good.

A year and a half ago, we lost our first baby. This month he/she would have turned one. I struggled greatly with this loss and went into a deep depression. This time around I learned not to run from God when the pain is great- but to run to Him. He truly is sufficient to handle ALL of our struggles and He provides peace that no one and nothing else can.

My mom and I started to do a Bible study together called “Stronger” after we found out about the potential difficulties the baby may face. Today’s devotion was all about stress and anxiety, how applicable! 🙂 One quote in particular resonated with me and I wanted to share:

“In fact, God never intended for me, or you, to be strong enough on our own. We were made to need Him, run to Him, and surrender to Him. As I see it, we have two choices when confronted with the stress of our lives. We can succumb to greater anxiety, fear and pain and continue to rack our minds for solutions and exhaust our bodies with worry. Then try to squeeze answers from other fallen people whose stress is probably greater then ours. Or we can choose to surrender our stress to the strength of God. HE IS STRONGER.”– Angela Thomas

When we give our stress and worries to God, we aren’t saying they don’t exist or that they aren’t difficult and incredibly painful. We are saying that:

“These worries I carry are legitimate concerns, but God is faithful and good. This situation I’m facing is awful and scary, but God is with me and promises He’ll never leave me”-Angela Thomas.

So with those words in mind, our hearts desire and prayer is that we can post on Thursday- Praise God! Our baby is healed!- but we may have to post that the cystic hygroma is still there and additional testing is being done. We may have to post that our sweet baby has gone to be with the Lord. And if we have to post either one of those things- I will still say with confidence that He is still good and He is stronger.

If you are reading this, you most likely have been following our story and have been praying for us. We truly have felt your prayers and we can not thank you enough! But I also know that you may be struggling with issues that are drowning you, that you feel you cannot handle on your own. Know that God is stronger and take comfort in Him.

Psalm 91:4 “He will cover you with his feathers. He will shelter you with his wings.His faithful promises are your armor and protection.”

Quote

“Receiving freedom and healing in answer to prayer is generally not something that is done to you, a situation in which you are just a passive participant. Occasionally God works this way and simply heals or frees a person outright. He is certainly capable of this. But in my experience, He typically asks us to play an active role in the journey toward wholeness. He doesn’t need our help but invites us to participate. Often this journey to freedom takes time, sometimes a very long time. And it takes perseverance. It takes participation on our part.”