The Diagnosis

In between late January and early February, Lucy was diagnosed with Dandy Walker. This is a malformation in her brain that unfortunately leaves so many questions unanswered. Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum and the fluid-filled spaces around it. Her key features of this syndrome is something that they discovered initially through ultrasound and they confirmed with MRI. They saw an enlargement of the fourth ventricle and also a partial absence of the cerebellar vermis.

I've read lots about Dandy Walker since the diagnosis and everything that I study gives us either one extreme or the other. The thing about Dandy Walker malformation, is that it can appear dramatically in some children or in others develop unnoticed. Symptoms in early infancy include slow motor development. In older children a child can show signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes.

Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system, including absence of the area made up of nerve fibers connecting the two cerebral hemispheres (corpus callosum) and as in Lucy's case, malformations of the heart.

When we received the diagnosis of Dandy-Walker Malformation with her brain, we were devastated BECAUSE we had no idea what to expect or how to help her. So we went home and started educating ourselves about therapies and other things we can do to help Lucy developmentally when she is here. We decided on changes we would make to the home. How we would transform an area into a gym for Lucy to work on development. We were excited about being proactive and collecting techniques that could help her. We talked with our daycare center to see if they would be able to accomodate a child with special needs, should the situation arise that I would need to continue to work outside of the home.

We were so caught up in the Dandy-Walker diagnosis, that we completely shut out the other huge boulder in front of us... the problems with her heart. Simultaneously, we were going to a pediatric cardiologist for Lucy. She saw problems with Lucy, but was hopeful about getting these problems fixed after birth. She detected the fluid around the heart, but didnt think it was as severe at first as the ultrasound findings had shown us. She did see the VSD (ventricular septal defect) in her heart, and she did she that Lucy's heart was three times the size of the 'normal' heart. Lucy also had an interrupted aortic arch, and a narrow Left Ventricular Outflow Tract (LVOT). But everything that she was finding she was confident that it will be touch and go, but her heart could be fixed. After another visit with her, she tells us, to the contrary, Lucia's condition was getting worse, and she did not think she would be a viable candidate for surgery following birth.

A couple hours following this appointment we had another ultrasound follow up where the doctors discovered Lucia had developed hydrops fetalis, a sign to them that the heart was failing and all the 'what-ifs', all the planning, was not even on the doctors minds anymore. We were told Lucy would not make it much longer. No one could define what "much longer" meant. We didnt know if this was a day, a week, a month, until term, no idea. They did tell us the didnt expect her to make it to 30 weeks, much less, to term. As I type this, Lucia and I are 32 weeks! Her heart has deteriorated further since the hydrops were first discovered, but she carries on.

We dont know what the future holds for Lucia, but we do know, not any step of the way have we ever given up hope. We will keep enjoying every moment with Lucy, and we cant wait until the day we meet our beautiful girl, for however long that may be.


We wait in hope for the LORD; he is our help and our shield. Psalm 33:20


I thank Him for his lessons on waiting, lessons on patience, for knowing everything through Him is possible, and I pray that I continue to grow closer to Him in all of this.

In His name, I pray,
Amen.