I am so sorry to hear about your baby. I have already posted on this site about a year ago. Was desperate at that time like you are now. We were told pretty much the same thing two days after our son was born. I honestly almost died, and my husband ended up in the hospital after we got the news, so I know how you must have felt. I understand that every case is different and of course you need to do everything you can, look for physio, depending on where you live, we had great support from Infant and Toddler's Program. I think my son benefited the most from the Infant Massage, would recommend it highly. We could see some weakness in his right arm for some time after we got out of the hospital, and it happened few times during the first few months that he would just stop using his right arm for a few days. Also, while doing the massage I could tell that he was having different motions with right and left foot. However, our son turned one couple of weeks ago and he is doing perfectly fine. There is absolutely nothing wrong with him. We went to see his neurologist a few weeks ago and he said our son recovered completely. He's walking, talking (already has more than ten words) and is the sweetest boy in the world. We do need to keep an eye on him since apparently he has greater risk to develop ADD/ADHD and similar developmental issues, but other than that he's fine. He proved the doctors wrong!!! Don't loose hope, especially if you see your baby moving all her limbs and if she's doing so well with breastfeeding. Oh, and do keep breastfeeding her, it's so important. I still breastfeed my son. Good luck and let me know if I can be of any help.
dijana15, sorry, was that you who replied? i'm a little confused using this board for the first time? would it be ok if i got in touch with you via email to ask you more questions about all this? i'm so desperate!
wills, how is noah doing today? i a looking for positive stories that will give me hope.
hello, i just recently found out that my 3.5 week old son suffered a stroke in-utero when i was around 32-33 weeks. needless to say, i've been depressed and devastasted and hopeless. i keep thinking of the worst case scenario happening to my son. it scares me to death. the stroke was in the left motor cortex. all the neurologist could tell us was, "the stroke was significant. i think he will walk and talk and have normal intelligence but he will probably have motor issues on the right side". he couldn't tell us how severe or mild it will be, but of course i'm sitting around picturing my son in a wheelchair or something. on the internet, all i can find are horror stories. in almost all cases of babies with strokes that i read about online, they almost all have cerebral palsy, they don't walk until 3 or older, some don't talk for a long time, some have to constantly get fitted for braces or get botox, etc. it's really scary. i just pray that i'm one of the lucky ones whose son doesn't show any lingering effects from this.
It really breaks my heart every time I read about another baby suffering stroke. It puts me in the same spot I was a year ago. I was never that depressed in my life, just wanted to lie down and die. I also had only horror pictures in my mind and I was picturing my son in the wheelchair and wondering what his life is going to be like. It's a heartbreaking experience. We were indeed the lucky ones and there hasn't been a day that I haven't thought about what happened and there hasn't been a day that I haven't thanked God that my baby is doing so well.
All I've learnt from our experience and talking to God knows how many doctors, is that looking at that initial MRI it's really difficult to know if those brain cells are dead or they are just swollen. And they do always give you those worst case scenarios that get stuck in your head, that you end up thinking about constantly.
I don't know what exactly helped our son, but I really think that breastfeeding is crucial along with the Infant Massage, the one where you massage each and every part of baby's body 2-3 times per day. Also, I kept talking to my little guy constantly while he was awake, or I was singing, dancing with him, holding him almost constantly. I got one of those sleep wrap things, and I carried him ALL the time, until he got so heavy and big that I couldn't put him in that thing any more. Also, ask around about the hydro therapy, we were about to get one for him, but we figured he was doing fine and never went for it, but I have heard great things about it. There're baby swimming classes you can sing up your babies for once they turn six months, that might also be very helpful. Apparently water really helps for some reason. We used to fill up our bathtub, have my husband get in and hold our son in the water.
I hope all this helps. Good luck to you all, you're in my thoughts and in my prayers. I wish this never happens to another baby ever again.
dijana15, when did you first find out about your baby's stroke? what kind of stroke did he have? what side was it on? what prognosis did the doctor give you? did you start therapy immediately? did PT/OT help? i'm so desperate and willing to try anything to "fix" this situation. my son is only 3.5 weeks old yet i already feel hopeless and like giving up.
also, how early on did you notice symptoms in your baby?
We found out about the stroke two days after he was born. He started having seazures about 12 hours after he was born, which is why they started testing him. He had stroke in the left parenteral lobe. They told us that with the baby's brain not being completely developed they can never tell what exactly is affected, but they told us with certainty that his right side will be affected and that he will have problems with motor skills, they just couldn't tell to what extent. Also, they said that his speech might also be affected. He's almost 13 months old and he's walking and talking!!!
Anyway, the county we live in (Montgomery County MD) has this great state funded program that work with families that have kids with special needs. People in the hospital gave us all necessary information so we had OT and PT coming to our home and working with our son twice a month in the beginning. So we started with the therapy immediately. We also had a person coming and showing me how to do professional Infant Massage, which I think helped us a lot. I was giving him massages three times per day in the first four months or so. I know exactly how you feel. I don't know how I survived that period, was totally out of my mind. I am so sorry you're going through all that. Let me know if I can help with anything else.
Anyway, the county we live in (Montgomery County MD) has this great state funded program that work with families that have kids with special needs. People in the hospital gave us all necessary information so we had OT and PT coming to our home and working with our son twice a month in the beginning. So we started with the therapy immediately. We also had a person coming and showing me how to do professional Infant Massage, which I think helped us a lot. I was giving him massages three times per day in the first four months or so. I know exactly how you feel. I don't know how I survived that period, was totally out of my mind. I am so sorry you're going through all that. Let me know if I can help with anything else.
thank you so much. does your son limp at all? or he walks normally? did he crawl normally as well? when did the right-side weakness start showing? and when did they stop? that is really amazing that he had a full recovery at only 1 yr old. that is so great to hear and gives me hope. i will definitely look into infant massage. i almost feel like i am waiting for my son to deteriorate - i just don't get it. right now he is moving all limbs and acting like a normal baby so i don't understand how/why in 4-6 months, that can all change. it makes no sense to me and it's terrifying.
The doctors' prognosis for us were terrifying as well, and although I asked thousand times if there is any hope our son could turn out to have no problems the answer every time was that we shouldn't hope for that. Then we met some wonderful nurses who told us all these stories about remarkable recoveries of babies who suffered stroke. The fact that he's moving his limbs tells you that the feeling is there, the nerves are "alive" so that's a great sign. Our son was moving all of his limbs as well, but we could tell that he does not have the same amount of strength in both of his hands and arms and that was apparent immediately in the hospital. However he regained the strength pretty soon after we got out, I'd say about 3 to 4 weeks later. I couldn't tell if his entire right side was weak since babies don't really do much at that age. Another important thing is tummy time. Our son hated it and was crying and fussing every time we'd put him on his tummy but we kept putting him constantly. That also helps them with their muscles and nerves, in case there's some stroke effect. He never limped, but it took him some time to start rolling. He rolled at about 4 1/2 months, almost five, which is pretty late considering we were putting him on his tummy constantly, but once he started rolling his development was amazing. He was standing and holding to our furniture at 6 months. At eight months he was making his first steps. Not by himself, of course, but he'd hold my and my husband's hand and would be walking between us. I've read that that's what happens if you give them a lot of massage and that's what happened to us. Also, every time we'd go to see our neurologist he'd tell us that he can't say if he's really doing well until he turns one and that was driving me crazy, but then we had a good friend that knew some neurologists and we started talking to some other doctors and they told us that if the feeling is there it's not going to disappear. It's not going to happen that he uses a certain part of his body and then suddenly stops using it, so don't worry about that. What might happen, at least that's what they told us is that certain group of muscles used for climbing and/or jumping do not develop well and that's something you can't tell now, but again Infant Massage really does miracles. I've found a web site that tells this amazing story about one boy's journey that had a pretty bad stroke at birth and all his mom was saying is that she believed that Massage did wonders for her son. I truly believe that massage did wonders for us as well. And if you don't breastfeed, if you lost milk or something you can still get it back, there are ways, and it's amazing how mother's milk can help with the healing process. I've read so many studies.
Also, we never put our son in those exersaucers and similar, that delays walking anyway. Try to cuddle with him as much as possible and talk talk talk. I'd start talking the minute he'd open his eyes and wouldn't stop until he falls asleep. I was carrying him in the sleep wrap constantly. There is something magic about the touch. One of our friend's friend, a doctor told us that the more we touch or talk to our baby the more connections are made in his brain, so even if a certain part of the brain is completely dead if we give a lot of input the other part of the brain might take over the functions that were initially in the part of the brain that is dead now. Also, I know how you feel, I was there, and I was alone, me and my husband were alone, he was working most of the time and our families that live in Europe had no idea what happened, we didn't want to worry them. I was completely alone and thought I was going to lose my mind, but then I also read how your positive energy is important for your baby's recovery, so I got out. If I was in the house I couldn't help it, but outside I felt much better. I took my son every day few times per day for a long walks and talked to him about what I'm seeing about how much I love him and so on. Babies can tell how you're feeling so try to be positive, although I know it can be hard. I had one cousin that knew about what happened and couple of friends and I'd call them every evening after I put my son to bed and would cry for hours, but not in front of him. I don't know if all this really helped him or he would have been fine anyway, but he is doing great now, he's a normal curious one year old, running around and chattering all day long. I wish you luck and again let me know if there is anything else I can help with. Although I'm sure you have wonderful friends if they don't have kids it really is difficult for them to understand how you're feeling. Find someone you can talk to, that's very important. Best of luck
thank you so much. i only pray and hope that my son is lucky like your child. where did you learn about infant massage? what state are you in? did you do any early intervention? i am in ny. unfortunately, early intervention won't allow our child to participate until he shows signs. but by then, it will be too late. so now i am setting up my own private physical therapy to start on as soon as possible. in the meantime, i am exercising his legs & arms everyday, about 4 times a day. i have no idea if it is helping at all but i guess i will try anything at all. i also put him on his tummy as much as possible. so far, he's able to pick up his head and turn it from side to side, which encourages me. i am so scared that one day he will just have his hand in a fist and won't be able to use it. i'm sure it won't happen suddenly though so that's why i'm trying to work so hard to prevent it. what i don't understand is - some babies have a stroke and end up severely impaired. meanwhile others have pretty massive strokes and end up with not a single lingering effect. i am so stressed. i look out for everything & watch his every move. today his eye looked crossed for a second and i immediately panicked thinking it was an effect from the stroke. i'm really going crazy lately. i just don't know what to do.
Hi,
My daughter has come along way with alot of hard work. She is sitting up on her own now which was my next biggest milestone for her. she is talking, saying dada and trying to say her brother's name everyday. She tries to say mama, but usually gives me a big smile instead. We do see a physio and OT everyweek. I am still breastfeeding since she never took a bottle. She is doing well with sippy cup and if I hold a cup to her mouth she will drink from it.She has only slept through the night 3 times, but the good thing is she is going to sleep on her own in her crib. she use to sleep with me for the whole night. She is very attached to me. Going to others is a challenge, but I try everyday just so she can get use to other people (any ideas?). She is standing up if I hold her and will lean against the couch. You can tell her left side is weaker so I work on that all the time will massages and stretches. She thinks it a game. We were told that she can't see through her left eye, but we know she can see. her hearing is normal, right now she has fluid behind her right eardrum, so that is giving her pain. We were told that she has a kidney stone, but it may never pass. We are waiting for another MRI to see if any changes have occured. I have learned alot of things during this past year and a bit. Trust your gut. Dont listen to everything doctors say. i know its hard because i am the type of person who thought they are the doctor, they know best..so untrue. they dont know your child. (sorry reply might seem choppy, so much has happenend over the past year, its hard to write everything) Its hard work, but when you get to that next milestone like smiling, laughing, sitting up etc. its all worth it!
My daughter has come along way with alot of hard work. She is sitting up on her own now which was my next biggest milestone for her. she is talking, saying dada and trying to say her brother's name everyday. She tries to say mama, but usually gives me a big smile instead. We do see a physio and OT everyweek. I am still breastfeeding since she never took a bottle. She is doing well with sippy cup and if I hold a cup to her mouth she will drink from it.She has only slept through the night 3 times, but the good thing is she is going to sleep on her own in her crib. she use to sleep with me for the whole night. She is very attached to me. Going to others is a challenge, but I try everyday just so she can get use to other people (any ideas?). She is standing up if I hold her and will lean against the couch. You can tell her left side is weaker so I work on that all the time will massages and stretches. She thinks it a game. We were told that she can't see through her left eye, but we know she can see. her hearing is normal, right now she has fluid behind her right eardrum, so that is giving her pain. We were told that she has a kidney stone, but it may never pass. We are waiting for another MRI to see if any changes have occured. I have learned alot of things during this past year and a bit. Trust your gut. Dont listen to everything doctors say. i know its hard because i am the type of person who thought they are the doctor, they know best..so untrue. they dont know your child. (sorry reply might seem choppy, so much has happenend over the past year, its hard to write everything) Its hard work, but when you get to that next milestone like smiling, laughing, sitting up etc. its all worth it!
thanks kmee, i'm so glad she's doing so well. has her left side gotten better with therapy? can she grasp things with her left hand? can she move her left arm ok? what about her left leg?
was your baby's stroke in the MCA region at all?