Baby diagnosed with VWD Type 1
Hi! I am here to share our story and to find some experiences of others living with VWD type 1.
Due to a chromosomal defect, our little boy (13 months) has only one copy of the VWF gene. He was just recently diagnosed with VWD type 1 (vWF activity around 30 %). We are still a little unsure what this means for his future life. He was born with a cleft palate and he already had his palatoplastic a few months ago. At the time of surgery, we neither had his genetic nor coagulation results yet, but they surgeons did not see any excessive bleeding after surgery.
He will be starting at daycare soon and a part of me is a little worried that they will not be able to take care of him appropriately. He is delayed in motor skills and he hurts himself quite easily, eg. falls on his face an bleeds from his lips or tongue. We still don’t know if we need an emergency kit for him and if daycare will be able to handle it.
From the people with VWD type 1 in this community, or parents of children with VWD type 1, could you share any experiences from your childhood that will give me some peace of mind? Did you need an emergency kit? When were you diagnosed with VWD?