Hey, Come Check this Out
When a diagnosis comes we often fear the worst. I want to encourage all reading this, that we need to remember that a diagnosis through ultrasound is not perfect. It is not gospel. Take heart and have patience and faith in the waiting. The unknown is scary but our God works in the unknown. He is for us and He is using this to make us more like Christ.
Ultrasounds are incredible. The improvements they have made even within the last decade have been substantial. Yet they are not perfect. We once had a doctor tell us that viewing a child with and ultrasound is like wearing those drunk googles while looking through a dirty window. Though there is an image, it is not a clear one.
During the early stages of her development and knowing the severity of the diagnosis our doctors presumed she had quite a few problems. We were told at one point that Lillian’s stomach was not connected to her esophagus. We were also told that she had a large hole in her heart, Furthermore the left side of her heart was under developed. So our doctor ordered a fetal echocardiogram for us about a 3 hours away car drive away.
My wife is absolutely incredible and a huge trooper. She also knows I love food so we made our trip a date. We ate some incredible teppanyaki and constantly reminded our selves of our Lord’s great love for our daughter. Make these appointments special. Embrace them together. Dads, drop everything. Go and love and serve your wife and child. Spend time in the sorrow, the unknown, and choose to trust the Lord. He is in control. King David reminds us of this reality even in fetal development Psalm 139:13-16 (NKJV)
For You formed my inward parts;
You covered me in my mother’s womb.
I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well.
My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the lowest parts of the earth.
Your eyes saw my substance, being yet unformed.
And in Your book they all were written,
The days fashioned for me,
When as yet there were none of them.
We need to trust these words. We need to implant them on our heart especially as we await for our child to develop. In Lillian’s case, our doctor was wrong and the fetal echo and further ultrasounds proved that. It showed that Lillian’s stomach was connected to her esophagus. In regards to her heart, yes the left side of her heart was a bit smaller but there was a logical conclusion to that. First she is incredibly tiny at this point so we are talking fractions of millimeters off what is normal development. Second, our fetal echo doctor told us that the left side of the heart is the side of the heart that pumps oxygenated blood which is not doing its job at the current moment because she gets oxygenated blood from mom but we should monitor it. She did have a small hole within her heart and that we will need to keep an eye on that. But after that conversation our pediatric cardiologist told us we should question the Trisomy 13 diagnosis based on the information our perinatologist was suggesting. He eluded that the diagnosis might be being read into because of the original genetics test that was 60% accurate. I’m sharing this because please understand that what is said while the child is in development is not a certain! There is no need fretting or worrying over what potentially might have been. Up until birth we prayed and hoped she didn’t have Trisomy 13 but we did everything we can to prepare for Lillian to have that syndrome.
But back to the diagnosis. Both the potential for a small left side and the holes in her heart can be very serious but hearing this news led to some spectacular finds. And praise God for this. I need us families to hear this and trust the Lord. Our God is a God who works miracles and is the Creator and sustainer of life. He also works in ways that we do not understand nor can predict. Embrace the news, trust the King, and seek life.
In Lillian’s case the development of a hole in her heart led my wife to find research done by Dr. Thomas Collins Pediatric Cardiologist from Stanford that highlighted the benefit of heart surgeries for children with trisomy 13 or 18. You can check that out on our Research paper’s tab. As we contemplate the potential need for heart surgery in utero, the Lord is directing us to countless doctors and support systems that we would not have found without the potential diagnosis. The way the Lord used it was unforeseen. It drew us into Stanford medical care and we cannot express our gratitude for all they have done for Lillian. But that information will come later.
As Lillian developed in the womb things were constantly changing but the principals we live by never change. Holding fasting to the truths that God is for life and He has allowed this for His good and our sanctification. As we trust those we can endure what comes whether it is death or life. Our trust in Him never changes, amen!
Let me leave us with the words of Shadrach, Meshach and Abednego as they faced certain death for disobeying the king of Babylon unjust demand. “O Nebuchadnezzar, we have no need to answer you in this matter. If that is the case, our God whom we serve is able to deliver us from the burning fiery furnace, and He will deliver us from your hand, O king. But if not, let it be known to you, O king, the we do not serve your gods, nor will we worship the gold image which you have set up.” Daniel 3:16-18 (NKJV)
UPDATE: April 2024 Lillian graduated from Stanford’s Pediatric Cardiology group. We don’t have to see them anymore! I love how our doctor said “I hope I never have to see you again in this context.” Celebrate with us! Praise God!
