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A baby with brain bleeds

769 Views 9 Replies 7 Participants Last post by  Mamatohaleybug
Hi I am new here, signed up awhile back but haven't had a chance to post. I have 8 kids, my oldest is 17 and my youngest are 8 almost 9 month old twin girls. My twins were taken 6 weeks early due to twin to twin transfusion syndrome. My Baby A Eleanore had severe brain bleeds and has brain damage. My baby B Clara so far seems to be ok with no lasting problems. If you know about TTTS Eleanore was the donor twin and Clara was the recipient.
Clara spent 2 weeks in the NICU and Eleanore spent over two months.
Right now since Eleanore is so young we don't know what to expect, she has two therapists that come out once a week for therapy one is physical and the other is occupational to help her take a bottle. At one point about 2 months ago she was taking all her formula thru a bottle but now she will only take 1-2 oz maybe at a feeding and gets the rest thru a g button.
She can see and her hearing is fine too. It is hard tho, the other kids ask when Eleanore will grow up like Clara. Clara is up in the exersaucer and rolling around on the floor playing. Oh Eleanore has a shunt in her head to to drain fluid. We do try to let her lay on the floor and play but since she seems so much more fragile with the shunt and g button and Clara is into that smacking at stuff stage I am afraid she will hurt her sister.
Anyway I would love to talk to some BTDT moms. It has been so hard on all of us taking care of two newborns is so hard anyway but add on one having special needs and it gets frustrating at times.
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I have no personal experience, but am a nurse and very familiar with TTTS.
This is a very supportive forum, also try posting in the multiples forum, a mom there may have kiddos with the same or similar stuff going on.

Hugs to you, I cannot imagine how overwhelming it must be some days.
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I forgot some stuff I wanted to say, can we say my mind is all over the place, LOL!
Anway she got the brain bleeds either right after birth or one Dr said she had them at birth due to me being anemic.
She also has seizures. We have never seen one and neither did the nurses but they did a few eegs on her and it showed she was having them. She is on phenobarb for them.
I think the worst part of all of it is the guilt I feel especially when the Dr tells me it was my fault and I hope Clara doesn't feel guilt when she gets older and realizes what happened.
EXCUSE ME? THE DOCTOR SAID IT WAS YOUR FAULT??!! Omg. You have GOT to be kidding me. What an ASS. How in the HELL is it your fault? Mothers don't CAUSE ttts. Omg. That is just horrible. It is NOT your fault. You let that piece of crappy information go, and tell that doctor to shove it.
: That is one toxic doctor!

Welcome to our board! It is wonderful to meet you. I'm not a nurse, nor do I have personal experience exactly like yours, but my younger son had a very high risk crisis birth and early infancy because he was born with a diaphragmatic hernia, and while he's doing very well, we do have some ongoing issues, including neurological ones.

Neuroplasticity, this new idea doctors have cottoned on to that seems kind of obvious to me, that is that the brain is a dynamic organ that changes and grows and adapts, is a wonderful thing. On my down days I remind myself that for any person, if there's a time to have some kind of shock or insult to the brain, that time is very early in life when the ability to recover and adapt is nothing short of amazing. Your daughter is going to surprise us all.

It is hard not to compare our kids at the best of times. There are some moms in my diaphragmatic hernia support group who are also dealing with one typical twin, one affected twin, so I have some inkling of what that means.

If you'd like a group of moms to hang out with many of whom are dealing with ongoing therapy, feeding stuff, tubes and meds, then come check out the babycenter babies with birth defects board. It's my internet home: a very accepting, gutsy group of women with a wide range of parenting and political ideas but a lot in common. (In other words, it presents different advantages from this wonderful forum.)

Again, welcome! Fiona
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My SIL had a prenature baby (not sure how many weeks) but he ended up having bleeding into brain and later at about 6 months I think he started to have seizures and has to be on medications now for it. He is almost 2 years old now and recently has been diagnosed with cerebral palsy. He has some permanent brain damage, but not too bad. He is only now starting to learn to walk. My SIL has been doing LOTS of rehabilitaion excersize with him that made HUGE difference and still will make a difference.
My SIL lives in Czech Republic - that's where I am from. And she is doing a therapy called Vojta's method. I am not a nurse and I have no knowladge of this but I have a friend PT and she is practising it here in USA.
Please try to find something about - I am sure they are places who are practising this method here or who can reffer you to it. Or books or something about it. It's suppose to be totally new revolutionary PT for babies and children with brain damage.

There is little info about it, but nothing major. Try to do some reasearch on it:

Good luck with your babies!
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I have a child with special needs--but not what you are experiencing.
I am familiar with it, however, through my experiences when my child was in Children's Hospital. She was in a feeding program, so we met a lot of parents with conditions that I was not familiar with before my dd was born.
I just wanted to comment about your doctor: YOU NEED A NEW DOCTOR NOW! NOT TOMORROW, NOT NEXT WEEK--BUT NOW.
I cannot believe that ANY professional would pin such a situation on the mother.
If I were you, I'd get legal aid and sue that bastard. I mean it.
Hey there,

First, that is a terrible doctor and none of this is your fault.

Second, my daughter has a shunt due to hydrocephalus secondary to spina bifida. I just wanted to say that you'll come to be amazed and what knocks that shunt can take. I do try to be careful about it of course, but she had hit her head pretty good a couple of times and it has never affected it. I once asked her neurosurgeon about it and he looked at me like I was crazy and said it was pretty strong. I also wanted to mention that baby's brain have so much plasticity that I believe it's really possible to make great strides in these early years. Our perinatalogist told us about kids who's brains were nearly non-existent by prenatal ultrasound due to hydrocephalus, but once they were shunted their brains rebounded dramatically. We met with a physical therapist in the NICU and she gave us some great exercises to start off with so we were able to do physical therapy from day one. I would really encourage you to just provide her brain with positive stimulation and positive touch. I think that is the best thing you can do for her.

I'm sorry to hear how rough it has been. Good luck with everything.
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Thanks for all the replies, I am reading them now.
The Dr who said that to me I had never seen before! We were at the hospital all day one day getting training for when Eleanore would come home and some Dr doing rounds I guess came in and was saying how she came to them like that and it had to have happened while I was pregnant.
He also looked at me and my mom and said I have no idea why this baby is still breathing you know she will just stop breathing one day.
Luckily he isn't her Dr.
Mindi--My DD has hydrocephalus and has two shunts. Hers was caused by a brain malformation called Dandy Walker. She has made incredible strides and is light years ahead of where anyone thought she would be. I encourage you to remain hopeful.

BTW, shunts are not easily damaged. Most kids with shunts are even allowed to play contact sports so try not to worry. The best things for her development are interaction and opportunity to work on new things.

Good luck!!
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