my lttle macie grace

Congrats on your baby Macie!

I gave birth last February to a beautiful baby girl, she however was born with a rare neurological disorder called Lissencephaly. This was never deteted during her gestation - but the diagnosis came to be after she got her MRI. The challenges we experienced was very hard as a parent ... scary of the unknown - but I found comfort by simply holding or touching her, reminding myself every day that she is alive and I am given the opportunity to be the parent of a true angel.

I know Macie is a true angel, just remember to have faith and stay strong - your daughter will need you to be strong for her to be strong.

God Bless
- Lexi

Hi and welcome to Share. Congratulations on the birth of Macie! I hope someone else is able to give you some information and help on what Macie is suffering from.
Laura

My daughter is diagnosed with grade 4 on one side and grade 3 on the other.she was born at26weeks and5 days.her twin brother is doing fine.any parents who went thru this and have a success/failure story to share please share it with me.docs say that there are high
Chances she will be handicapped and asking us if we need to take her off the support .please help!!!

I had twins at 28 weeks. Brian was 620g and isabella 1190g. I spent months in the hospital in bed with bedpan to keep them in. Brian had a pda nad got ibrofen whoch sent him into renal failure and then nec and he died after one month. Isabella has bilateral grade 2 bleeds with pvl and has cerebral palsy. She is looking great cognitively as she speaks three languages at 23 months corrected. No walking yet though. Only cruising. Pt three times per week. I no longer work to care for her. I see lots of kids with grade 4 bleeds there too. Parents are exhausted. But above all i need to tell you that the profound agony we feel from losing brian is worse than any exhaustion. I wanted him any way he came home. Maybe we were selfish. We just love him so much. I miss him massively. I kept telling him in the end to let go if he felt he had enough. I would whisper it to him through the incubator window. I told him we would be ok without him and to do what was best for himself.... And so he died in my arms one night at 2:30am. And now we go forward for his twin. With a gapping hole in our hearts. I feel your pain. You really need to follow your instinct on this one. We live in europe so removing support is illegal here. My son had to shut down on his own. I think kids also decide for themselves. Think long and hard about it for you only have yourselves to deal with it afterwards. We mourn and care for our children alone really.

Hi Carolyn
After long discussions with doctors and family members, we decided to let her go. She passed away after 12 days of living. We decided thats the right thing for her. Could not imagine my daughter suffering for rest of her life. May her soul rest in peace.

I wish you good luck with Isabella.