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Leval 4 bilateral brain bleed (both sides)

ndskin77
0 Recommendations

I had my identical twin boys on october 30,2009 @ 25 wks. At 20 wks we had the Twin To Twin Surgery (they survived). Twin A benjamin has a bilateral leval 4 brain bleed Dr.'s say he will he will appear normal the first year or so until he starts hitting mile stones. We ate looking at the "Big picture" with the quality of life. This is the worst bleed imaginable. If he onlt had it on one side it would be differant they say. 3win B David goes back & forth b/t 0-2 from side to side. They say Ben will 100% be unable to walk, speak etc baded on every case they have seen this comes from many in the field. Is there anyone who has gone through this severe bleed, who didn't give up, who is seeing there child age 1 and up? Ben weighed 1.3 and 4abid 1.6 david has done very well so far and I pray his bleed stays they say the 1st 10 days are when bleed progresses. Please help I am lost.

Explore topics in this discussion:

Surgery Pain Hearing aids Leukomalacia Hydrocephalus CPAP Pregnancy Cerebral palsy

28 replies

M-and-D-Mommy

Congrats on the birth of your boys! I am sorry that you are facing such terrible news. I do not have advise to offer on this particular subject, but I wanted to let you know that I will be keeping you and your boys in my prayers. Please keep us updated on their progress. Hang in there! Please use us to vent ANYTIME you feel the need. We are here for you!

ndskin77

I am truly grateful. This has to be the hardest decision we have ever made.

quadmomma

congrats on your babies and do not do not do not do not do not, let anyone tell you your baby will never be able to _____. two of mine had bleeds one a level 1 and 4 the other a level 3 and 4. both are doing great right now. slightly behind developmentally (and that i could understand saying to expect), but to tell you your baby will never walk talk.... is rediculous to be blunt. enjoy your babies, goo luck and dont give up!

if you want to check out more of our story go to www.coxquads.blogspot.com The ones with the bleeds are Brody and Kylee.

again congrats!!

Prayingforourxtwins

congrats on your boys! I have twin boys in the NICU as well. they were born at 23/5 days (1 lb. 8 oz). they were born on aug 18th, so we are now almost 3 months into it. One baby has a grade 3/4 and one has a grade 2/3. We were never told they wouldn't walk, talk, eat, etc. etc., but were told that things don't look good. Therefore, we had to have the "quality of life talk". With lots of prayer (lots!) God led us to where we are today. They are stil with us. They beat the 20% odds of living. I am believing that they won't take that course that all the doctors are saying they will take. In fact, today, the baby with the grade 3/4 bleed drank TWO whole bottles. Our boys are doing so well right now, it's a true miracle. You have to really evaluate your life. But please don' t let any doctor tell you your babies will or will not do such and such. Yes, they have statistics, so I would prefer to hear, " according to data, your babies are not likely to, etc. etc. They can't say for certain that they will never walk or talk. I totally agree with quadmomma. The doctors are not God--they don't always see these babies years down the road.
perhaps getting a second opinion.

Congrats again!

Enjoy your babies...

meggs2003

I agree with quadmomma. We have spoke about this subject many times too. Our docs never gave us the "everest will never do this " speech. He had grade 3-4 ivh w/ hydrocphalus. He had 3 different surgeries, he had a resirvoir placed at 2 weeks of age, then a VP shunt placed at 4 weeks. He had a shunt revision at 6 weeks. He is now 5 months, just about 3 corrected and he is doing well. He smiles and talks up a storm. Kicks both legs and grabs his toys. He works with a PT and OT to help him develop"normally" but please dont get discouraged by this! If you need to try tto get another neurologist to look at him!

1pair-n-1spare

I want to give you some hope, of a different sort.

I want you to look at the little girl pictured above. She didn't have a brain bleed, but rather an acute bilateral periventricular leukomalacia (both sides, dead matter deep in the ventricals of the brain). This is my 7 year old daughter, Julia.

She is a miracle. She is beautiful, and while she has CP, and doesn't walk or speak in the normal way, she is by no means someone to give up on. We had doctors tell us that Julia wouldn't recognise us or our love, that she was deaf, blind, would never walk independently, or be able to understand our words or express herself. Well, let me tell you that was an absolute crock of CRAP.

My daughter does sit in a wheelchair, has since she was 18 months old. But, she also walks independently with the aid of a specialized walker. She not only understands us, but acknowleges our love and us. She does not speak, but rather has a computer that allows her to express her wants and desires, besides an unbelieavably animated face and can nod her head and shake her head to tell us Yes and No. Julia is in 1st grade, same as all the other 7 year olds (she just turned 7 yesterday). She can write her name, count coins, do math, read sight words, does art, goes to the library, is a big sister to twin girls and a new baby on the way. She GETS comedy, and is one of the funniest kids on the block. Kids gravitate to her at school, and she has lots of friends.

If we had taken the advice of the doctor who "prepared us" for the worst, our daughter would be dead today. And never have been able to give the world the unique gifts of that are just Julia.

Doctors cannot tell you how your love and attention will help a baby progress. And personally, I think that any doctor who thinks a parent of a child who can't talk or walk should consider "quality of life" should rot in hell for eternity. My daughter's quality of life is so much better for accepting who she is, and finding ways to overcome or circumvent her different abilities. I am glad she taught me how to fight.

I pray that your sons are healthy, that the BB's resolve (that can and does happen) and that there is no lasting injury. But if there is, have hope, disabilities are not the end of the world, merely the beginning of a different way of life.

Lisa R
Boston
Mom to Julia (28 wks)
Catherine and Patricia (34 weeks)
Baby due (4/15)

danisue76

My one twin had bilateral grade 3 and a grade 4 which left a small pvl. Currently 14 months or 11 1/2 adjusted. We were told he would probably be severely disabled. They have to tell you worst case scenerio and every child is different. They just don't know. Right now my "severley disabled twin is taking 2 steps and repeated almost anything. He is up to saying over a dozen different words. NO signs of disability. The worst feeling is waiting and you will pick everything he does apart looking for a sign. Try and look at everyday and not the future. Focus on the child he is and not the child you expect him to be. Someone told me that once too. Congratulations and God Bless those little miracles.

ndskin77

I am si grateful for all of your voices. Today I am going to request to speak w/ neurologist and get another opinion. I am lost & very sad.

meggs2003

ndskin-
Did they say if the brain tissue is damaged? does he have hydrocephalus? did they mention surgery? I would definatly get neurosurgery involved. You are your babies advocate! Keep your hopes up.
You are your boys are in my thoughts and prayers!
give us an update

M-and-D-Mommy

Just thought I'd check in on you and your boys today. By the postings above it sounds like there is reason to remain very hopeful for your little ones future. Please keep us updated on things. Good luck!!!!

Oh and correction to my previous posting...I meant *advice*:)

Feistylioness78

Christian had a grade III and IV. We also got the talk and he and his brother just turned 2 on wed. Christian is now pulling himself up to stand. He is very delayed but had a great quality of life. We don't know what the future holds yet. He also has mild spastic displagia CP.

lchang4

I had undiagnosed Twin-To-Twin Transfusion Syndrome and gave birth at 25 weeks 3 days, 1 lb 9oz each. They are currently 14.5 months old/11 months adjusted, weighs 20lbs with chubby rolls. Donor twin wasn't peeing the first week of life and her kidneys were going toward failure. She had grade 3 and 4 brain bleeds as well as slight damage to the cerebellum. She was on the oscillator vent for 6 weeks and had infections twice during her 5 months NICU stay. She had the PDA ligation and ROP surgery. We almost gave up on her when she was so swollen during the first infection. She would cry when she knew I was there. It almost broke my heart. We kept praying and talking to her and asking her to hang on. I sang to her and I believe she could hear me. The doctors gave us grim reports all the time. We saw the neurologist and he was grim too. We decided that we wanted her to live and don't care if she's disabled down the road. It's something every parent will have to decide.

Our persistence paid off. My miracle baby came home without oxygen and is thriving. Her kidney function is stable for now. But we are in the process of testing in preparation of transplant later on. I am hoping I'm a match. We had an MRI done in July and the neurologist was shocked that the IVH had completely resolved. But the cerebellum damage was still there. However, he said it deals more with motor skills so she may be clumsy. Right now, she's not good with rolling over but she can sit up straight and turn counter-clockwise. She would scoot and end up at a different place. She can also scoot on her tummy backwards. She loves to jump in the Jumperoo. One thing the doctors didn't prepare me was hearing loss. She developed profound to severe hearing loss at the end of the NICU stay. That resolved to now mild-moderate. She's wearing hearing aids right now.

Good luck with your babies. It's going to be a long rollercoaster ride. I'm keeping you all in my prayers.

PSMom

You are going through the exact situation we went through. Our twin boys Parker and Peter were born at 23.2 weeks/days.
A week after birth they did the head scans and Parkers was full of blood on both sides and the doctors told us that he would be severly disabled, basically brain dead. So after alot of prayers we decided to turn Parker over to God. This is not a decision that anyone can make for you, but I can tell you not a day goes by that I wish things would have turned out different but we also needed to think about life. Life is not spending all of your time in a wheel chair with a feeding tube and oxygen at least not to us.
On the positive side, Peter is now 9 months corrected and is a miracle in every sense of the word, the doctors are absolutley amazed on how well he is doing.

Good luck to you and God me with you.

www.caringbridge.org/parkerandpetersorensen

shaleesha

My son was a 24weeker with a grade 4 bleed on both sides and he just learned how to walk in june at 2yrs 1month and he talks quite well. He has cerebral palsy but it is very mild and he is doing much much better than the doctors ever told me he would. He got hyrdocephalus from the bleed and has a shunt but he is really doing much better than expected. Have faith and don't do anything you don't want to. Sometimes doctor's are wrong and in my son's case they were.

ndskin77

My little Ben passed away on the 10th! I am heartbroken! I feel like a part of me is missing. I went to see David (Baby B)n and he warms my heart. Jsut knowing that he has his little brother watching over him is a happy thought. David is doing good. The heart Dr. said they see his PDA closing and will not do surgery for now. I got to hold him for the 1st time yesterday- it was heaven. I know my little angel is loving being able to be watching over us.

lchang4

I am so sorry. You and your family are in my thoughts and prayers.

PSMom

I am so sorry, the best advice I can give you is take one day at a time and hang on.

ndskin77

I am trying! I have some hope when I go to see David (baby B). He is doing prety good. Started feeding every 3 hours. His stomach is still not matured but in timr. Today they did another scan of his brain. I pray it has gone- his bleed was a 1-2. Keeo praying- he to is my miracle child.

jbennion

I am so sorry for your loss. There are many on this site who have been through this... we are here to support and help! Blessings and prayers for your baby still in the NICU... keep us updated!

M-and-D-Mommy

I am so sorry for your loss. My heart goes out to you. I lost one of mine (triplets) during my pregnancy and that was terrible for me. I can not imagine what you must be going through. Please know that my thoughts and prayers are with you and David!! Please keep us updated on David's progress. We are all here for you!

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