New born preemie with AML

[lonnieowen]

I am new to this forum and did not know how this works but thought I would share my current situation I am a new father of two beautiful girls my wife and I had to delivery early due to complications with one of our babies blood flow before giving birth we had a blood test from my wife which should trisomy 21 because of twins we did not know if it was both or just one. After a uncomplicated c section just being early at 26and4 I had two daughters Baby A: Elizabeth Daisy, 1lb 13.3oz, 3:39pm. Baby B: Catherine Irene, 2lbs .1oz, 3:42pm. My baby Elizabeth was having all sorts of issues blood clotting, blood pressure, breathing, liver swollen and brain bleeding, finally on day 2 and blood test she was diagnosed with acute leukemia because of her white cell count being out of control we have started treatment with Cytarabine she has responded good to treatment but her kidneys are still not working like they should. I have faith but it is hard I have posted a few times now and it has been therapeutic for me to communicate emotionally as I don't really do this with my amazing home support group. I am a little unsure what I am asking for but wanted to share my journey I am on day 4 and still going thank you for letting me share.

Unfortunately my Elizabeth needed more time then her body could provide I am at peace knowing that she helped get her sister out before they both were in danger I know she is watching over all of us I miss her so much already and am trying every day to keep going as my Catherine is doing great am is improving her feeds and I will possibly be able to hold her soon if she keeps fighting. Thank you all for the support and prayers and encouragements. I hope I can pass the same energy and encouragement on to others in need just as you all have.

[2003UK]

Hi Ionnieowen, a great big welcome perhaps your post does not have to have a question or purpose but if it is therapeutic for you, that sounds great to me.I cannot imagine what your emotions can be like, probably all over the place as if you are on a day 4 rollercoaster.

Don't forget your wife is probably feeling similar emotions plus her hormones and medical affects of a C section are in the mix.

Elizabeth is in the best place and has been diagnosed early and is being treated straight away.

I was diagnosed 18 yrs ago with another blood cancer and the one thing I would say is perhaps not keep searching the internet, you have found Leukaemia Care which is a brilliant, reliable, informative, supportive website, there are some sites and information out there that might not be. They have a support line, a buddy scheme, local and/or virtual support groups and you can apply for some financial assistance for counselling.

It is very early days as a family so enjoy your time together, congratulations and you know where we are now.

[Hiker13]

Praying for you and your family.

[Jm954]

Hi there,

Congratulations on the birth of your twin girls.

I'm sorry this is happening at what should be such a special time for you and your wife. This is a safe place to say what we often cannot share with those closest to us for fear of upsetting and worrying them or not knowing what to say. You are going through a very difficult time and you've expressed yourself well.

It's not unusual for Down's syndrome babies to be born with what can appear to be acute leukaemia. It's usually a transient phenomena due to a well known abnormality in the haematopoietic transcription factor gene GATA1 which is found in about a third of Down's babies and the majority (90%) lose the GATA1 gene as they get older.

The majority of these babies need no treatment or minimal treatment before their blood results become normal. Unfortunately, some of these babies have high counts and disseminated leukaemic infiltration (10–20 % of neonates) which shows itself as massive hepatosplenomegaly, blood clotting disorders and multiorgan failure including kidney failure. These babies with high counts do benefit from some chemotherapy to control the white cell count to help their organs recover and many go on to do well.

Remember that your special and precious baby girls are in the safest place in hospital with experts and the best care all around them 24 hours a day. How is your wife coping?

I hope little Elizabeth recovers quickly and both she and Catherine do well. I'll say prayers for you all.

Look after yourself and take care

Jackie

[lonnieowen in reply to Jm954]

We are doing ok my daughter held on for as long as she could as she was so premature and the compounding issues she had she gained her wings the other night I still wonder why and how this happened we are focused on the time we had with her and now focused on her sisters little milestones she seems to be doing really well and the doctors see no issues thus far she had her second ultrasound for her brain with not bleeding and has no physical features of Down Syndrome thus far but being so small they are not doing any unnecessary test thank you again for the support and information as it has helped me with understanding a little better what was going on.

[Jm954 in reply to lonnieowen]

I'm so, so sorry to hear that little Elizabeth couldn't hold on any longer, she is definitely with the angels. Downs babies can be born with so many conditions and heart malformations are a common complication. She was struggling with so much. ❤️

I'm pleased that Catherine is doing so well and she will bring you comfort and joy. She will always have Elizabeth with her and so will you and your wife. I lost a twin 30+ years ago but earlier in the pregnancy and I still think of that little lost soul.

It sounds as though you have the support of a really excellent and compassionate team looking after your little family.

I'm sending you all my condolences and best wishes

Jackie

[DrunkJam_UK in reply to lonnieowen]

I am so sorry to read this. So sorry for your loss.

[DrunkJam_UK]

Oh my goodness, congratulations on the arrival of the girls. This must be a really difficult time, please do feel welcome to come here to talk, ask questions, just to have someone to yell at.

[lonnieowen in reply to DrunkJam_UK]

Thank you for the support.

[MeNotDavid]

Hi Ionnieowen - I do sympathise with your feelings in a nearly overwhelming situation. I hope your baby Catherine continues to do well. I do so agree with 'Champion's' response about your wife's feelings too - you have a lot to deal with, and initially you may find you don't do it in the same way, especially as she carried Elizabeth to term. But you will both soon become absorbed in looking after Catherine, and will find a way through this together, I'm sure. All my thoughts to you for that.