Born with Leukemia

In my short-ish experience, I've seen one case of neonatal leukemia and several cases of myeloproliferative disorder in newborns with Trisomy 21. (Not exactly leukemia, but related.)

i have seen neonatal leukemia. the infant died within hours.

Poor baby. I haven't seen congenital leukemia, but I have seen several babies born with large tumors (two of them were the tumors always on the neck and lower face.) Both babies had the tumors removed from their throat/neck areas and went on to have months of chemo, in our unit.

dawnbethe, are you talking about cystic hygroma? I've seen a few of those too. One little girl had a huge one on the left side of her face and neck that wasn't completely resectable and it kept coming back. She was trach-dependent because of it. But she never let it stop her!

Jan--that's probably the one. I can NEVER remember the medical terms for things. lol. One of those former babies is now a teenager. She has a really deformed jaw and mouth, but we see her almost every year either at the annual reunion picnic or when she visits after being in cranial-facial clinic.

Thanks for the info. it is a sad beginning to life.

had a little one, less than a week old and diagnosed with leukemia - anyone ever see this?

Yes, unfortunately we have had a few infants who have been diagnosed with leukemia at birth. Usually it is AML. They are extremely ill and unstable, anwe we place them on strict isolation. If they stabilize to the point that chemotherapy can be started, we have certified Oncology nurses come to the NICU to administer it. It is heart breaking, because sometimes these infants survive for a few weeks, but overall, we have found their prognosis to be very poor.

I've seen a few cases of neuroblastoma and some other tumors in our unit. I have not seen neo leukemia but we've seen some other blood disorders that are quite rare.

had a little one, less than a week old and diagnosed with leukemia - anyone ever see this?

Yes, in 2002 my son was born on 10/22 and diagnosed with AML M5 on 12/19/02. Doctors at Lucile Packard in Palo Alto, CA said after looking at the cells they determined the age of the cell were 3 months old.

He survived 19 months after undergoing over 60 surgical procedures, ARDS and over 8 months of aspergelocis (sp) (CNS Fungus) which is what eventually took his life on 8/28/04. We were in the hospital for 9 consecutive months.

I'm here because I am starting up a nonprofit to help families like mine through this roller coaster ride and just looking for solid medical facts. Like how many children are born with cancer in the US and if possible around the world? How long is the average length of their life if and when they do pass? How about numbers based on age of diagnoses; 0 - 5, 6 - 10, 11 - 19? Is there a specific place or journal of medical facts I can access?

If anyone sees this, please respond and let me know.

Thank you!

I've seen two...both were Trisomy 21 kids We sent them over to the Children's hospital across town to start treatment.

You know, I just learned that Tri 21 kids are prone to leukemia, but theirs is 100% curable - per our oncologist. wonder why? We recently had a Tri 21 baby with transient leukemia. Always something new to learn:)