Processing new information: WT1? WT??

When we were first diagnosed I struggled with trying to control what I thought I could. Finding the right surgeon and hospital. Praying specifically for all her organs being crushed inside her. Finding meaning in this new path we were on. Finding meaning and trying to do good led me to the DHREAMS study. I thought if we could participate in CDH research, maybe we could get some information for our family, but more importantly help the greater field of research for the entire CDH community, and that that would comfort me, regardless our outcome. So Jon and I sent in blood samples and the hospital sent samples from Finley while she was in the NICU.

Fast forward 3.5 years. We never heard anything so I just assumed they didn’t find anything within our samples.Until this week. They reached out to schedule a phone call between myself, the study coordinator and Dr. Wendy Chung. She is the lead researcher. Google her. She is a rock star. I knew if she was on the call, they had found something.

I may relay this information incorrectly. So forgive me. The way I understood it, Finley has an abnormal WT1 gene. Jon and I don’t have this abnormality. This means the change initiated in her. We didn’t pass this on. They don’t know why the genetic change happened. Could have happened when the sperm and egg met, or early in her formation. This gene known to be responsible to diaphragm development, heart, and kidney and a list of other things. She could have also had congenital heart disease, but she did not. She may develop a Wills Tumor. They need to confirm the WT1 gene, which involves us sending in a mouth swab from Finley. Wait 4 weeks. Once confirmed, they will start to do annual ultrasounds to watch her kidneys. One blessing about her ‘not’ choledochal cyst, is that I am pretty sure they have already looked at her kidneys a few times and I have comfort in knowing that I don’t think she has any issues… yet. So add another maybe to add to the long list of things that Finley ‘could’ have. I’m not overwhelmingly stressed about that one. We have been dealing with a long list of maybes that haven’t come to fruition for a while. God created Finley. He has a plan for her. He has answered so many prayers for her, has worked miracles in her body. I can give him this latest worry.

What hurts my heart the most is the news that Finley now has a 50% chance of having a baby with CDH herself.

Now before I return to a place of, yes, remember what I just write about God being bigger? About giving my worry? About him having answered so many prayers for her already? First I mourn a little. I always assumed Finley just had a 1% chance of having a CDH baby. I have had time to process that list of things that ‘could’ happen. Her having a CDH baby was not on that list for me. Her having to decide to seek genetic help to ensure her baby does not have CDH was not on that list. I hate that she will have to make this decision someday (a long ways down the road). If you know me at all, you know I can jump FAR ahead of things – so me worrying about Finley’s future baby NOW, is completely within my wheelhouse. So right now I am processing this WT1 gene – which I am calling the WTF gene in my head.

But here’s the wonderful part – I can give this to God. Like everything else. I rest assured in the comfort that he’s got this. He has a plan. And I am to remember Phillipians 4:4-7

“4 Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near.Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

This news hurts my heart. This is truth. BUT – there is something more powerful than statistics and probability and worry. Finley is ALIVE. Finley is THRIVING. Statistics could not have predicted her doing as well as she is today. There was a day when they were preparing me of the very real possibility that she was dying. But God shielded me from even hearing that information as my friend Lisa walked away heart broken hearing the same information. And she made a miraculous turn around. She is such a special little human that God has even bigger things in store for. So I will take comfort in those truths. My heart hurts – but I know God love Finley even more than I do. So I will present my worries and fears to him and rest in his comfort. Another side note and positive thought: I am even more motivated to raise money for CDH research than before.

Please join me in praying that Finley won’t develop the Wills Tumor and for peace as we process this new information.

Anyone else in my CDH community been told that their child’s CDH was caused by the WT1 gene?