Tom and Emily’s Story

Site created on September 24, 2018

Our tale of understanding Hypoplatistic Left Heart Syndrome, HLHS.

Newest Update

Journal entry by Thomas Paauw

We want to start by thanking everyone for all of the prayers, love, and energy that you have put into taking care of Miles, Emily and me. Emily and I received very difficult news on Wednesday following a meeting in which the pediatric cardiologists, transplant, palliative care, and neurology teams had a chance to discuss Miles with one another.  It was determined that Miles is no longer a candidate for a heart transplant. This decision was based on his current clinical status in which his heart continues to struggle and his kidneys and lungs are declining.  In addition to this, the antibodies Miles has developed limit the heart transplant population by 91 percent, and these antibodies will only worsen from week to week. On Wednesday, we were informed that at this point all options have been exhausted and that Miles cannot get better. Therefore, it is the whole team’s recommendation that we do what we can to make Miles comfortable at this time and discuss end of life.  


We are broken by this news.  To think about end of life for our sweet boy is incomprehensible and the pain is indescribable. We relish in this last weekend that we will have with him and the memories of his smiles and curiosity that we will cherish forever.  


With the recommendations of the physicians in mind, we have decided that on Sunday we will remove Miles’ ventilator and stop the medicines that are helping his heart. We are confident that this is the best course of action for Miles as he will be whole and perfect in heaven, running around with his siblings. We will take Saturday to enjoy visits with family and friends, reflecting on Miles’ life, and baptizing him. This baptism is a sign and seal that Miles is a covenant child, and that God has had a plan for him long before we had the pleasure of knowing him.


We are very thankful for the 8 months we got to spend with Miles, especially the four months at home. It is hard for us to imagine life without Miles, but we are grateful for the peace that passes all understanding promised to us in Phillipians 4. Thank you to the huge army of prayer warriors that has upheld us throughout this crazy journey. 

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