Help for week old baby with birth brain injury

[Vettey]

Hi all

I have been around Braintalk for a few years, and have been a regular reader of CN posts due to my own childhood onset neuro condition.

I am now writing to seek info for my niece who is 8 days old today, absolutely gorgeous and wasn't expected to make it this long.

She was born on Fri 24th Nov, and i was at the birth. The birth was going pretty smoothly until right near the end. The baby went into distress, and a caesarian was ordered but then theatre was not available straight away and so they decided to get her out the normal way (with assistance). They tried suction twice, followed by forceps.

The baby came out not breathing and the doctor said that the cord had been tight around her neck. They started CPR straight away and then she was taken away to the nursery where they continued working. Her AGPAR (?? can't remember the proper term) for 1 min and 5 min were 0 and 1. The baby was put on ventilator and later flown to a specialist hospital in the capital city.

We were told later that night she was trying to fight the breathing machine, but then later told that there was little brain activity. However, there were detecting seizures.

Sunday afternoon (Day 3), a family meeting was called with the doctor and we had been prepared that it would be to discuss turning the machines off. In the hour before the meeting, however slight brain activity was detected and at the meeting they said we would wait for an MRI to be done on Tues.

On Tues, the MRi showed massive damage to the basal ganglia and the motor cortex and we received the news that we had prepared for on Sunday. The doctors wanted to turn the breathing machine off and they did not know what was going to happen but they didn't think that the baby would live very long. The baby had no gag reflex either.

On Wed, we had a dedication ceremony (like a Christening) for the baby with friends and family. Later that evening, the immediate family prepared to say good-bye and then the doctors took out the breathing tube. The baby was breathing on her own but the doctors has said that she might breathe for 6 mins or 6 hours they just didn't know.

Thurs morning, baby was still here with strong breathing. Later that day, they inserted a feeding tube (naso-gastric) and the baby was tolerating 3 hourly feeds.

The baby started making more voluntary movements, and was making suckling movements with her mouth. A gag reflex was detected but still weak.

Things were improving really quickly (more than any one predicted) and they tried feeding by mouth. This was not so good the first time but Sat arvo they removed the feeding tube and the baby is now feeding by bottle, and hopefully working up to breast.

The baby has some jerks that aren't quite normal but none of the rigidity that was predicted by the MRI. She responds to light and looks at faces and also to sound. They are going to do the baby hearing test soon. It is just amazing what she is doing at the moment when we thought we were going to lose her just 4 days ago.

My questions are these.

Do others who have babies with severe brain injuries at birth see the rigidity and spasticity when they are little?

Does damage to these areas indicate intellectual disability as well as physical?

Can 'damage' seen on MRI on a 4 day old baby 'heal' itself?

Has anyone else has a baby with damage to this two areas, basal ganglia and motor cortex, and what disabilities do they have now?

The little one has proved she is a fighter already, but it is hard not to think of the future when we were given such dire predictions.

I am open to all stories, both positive and negative, and can decide what to share with the family.

Thanks,

Vettey

[RathyKay]

Wow! She sounds like quite the little fighter. I have to believe that's a good sign. It's a little late, but I wanted to post a quick reply. I'm not sure I can answer many (or any) of your questions. Just remember that the brain at this stage of the game is considered "plastic" - easily molded and rapidly growing, so there is hope. There are a couple of kids with hemispherectimies (sp?) doing really well, so the amount of damage doesn't always correlate to how affected the child is. Unfortunately, there is no crystal ball to tell us the future. Several here were given grim prognoses and their kids rose well above those dire predictions. I think a lot of doctors like to give worst case scenarios so that we appreciate it even more when our kids reach that milestone. (((Hugs))) for you and your niece and her family. Sounds like you've had quite the roller coaster ride.

[Sarahndipity]

I'm sorry to hear about your niece. What an amazing story of survival so far, wow! I agree, docs, especially Neonatologists have a terrible bed side manner, and give you the worst possible outcome, as to not have hope that can possibly be shot down ( from my own expirience ). I take that back, the worst bed side mannered docs in my expiience is DEF her neuro. Okay, enough about us. I don't have knowledge to those specific areas of the brain, but by her improving her suck already is a HUGE positive sign, HUGE! I mean, that in itself give SO much hope for other things to come. This girl is breathing on her own, appears to have vision, sucking, and gagging.. I'd say the odds are pretty good in her favor to start out on the right path!

[lilac7700]

I defintely agree with the Neuro's being the worst at bedside manner! Dont let these docs make you give in and give up hope. That little girl is already proving her will to survive. Sending love to you and your family at this difficult time. melissa

[wheeliebird]

{{{Vettey}}} WOW, that little one is a fighter!! Keep the faith and we'll keep the Prayers coming from heere on CN!! I truly believe that little one will keep fighting. Let me tell you, I am 46 yrs old and I have Cerebral Palsy. When I was first born I wasn't expected to make it, but here I am 46 yrs later kicking and living an independent productive life. Keep the faith and hang in there!

{{{HUGS}}} and Prayers!

Robin

[Fayelle]

What an amazing story :) !

It really is awesome the spirits desire to live despite poor odds.

I am sorry I have no information to share....

I just wanted to say that I am in awe of this baby and her desire to be here!

Thanks for sharing this with us, my thoughts are with your family and the little one......If anyone deserves a recovery and life it is this little fighter!

Fay

[mama z]

Hi,

I'm sorry to hear about the struggles your niece is going through. She sounds like a true fighter.

Andrew has the diagnosis of Hypoxic Ischemic Encephalapathy (HIE) caused by birth trauma. It's basically a very fancy way of saying he has a brain injury due to lack of oxygen to the brain. He was born via a "not so emergency" c-section after several trials with the vacuum. He was immediately put in the NICU and transferred 24 hours later to the Children's Hospital because he was having a lot of seizure activity and had gone status.

At that point we were told that the brain damage was very severe and that they didn't think Andrew would live longer than 3 weeks, maybe 3 months at the most. He is now 6 years old and going strong.

Andrew did start to regain his suck when he was about 2 weeks old and by 3 weeks he was nursing strong. I was able to breastfeed until he was 10 months old.

Each of our kids is so different. Some are more physically involved than others, some have more medical issues than others. The brain is very unknown yet and is constantly rewiring itself. The earlier you realize this the earlier you can get therapies in. (physical therapy, occupational therapy and speech)

There are a couple of yahoogroups for parents of kids with birth injuries or HIE. I am a moderator for the HIESC group and you're more than welcome to join. Lots of parents there with small children. Just go to www.yahoogroups.com and do a search for HIESC.

I'm glad you stopped by to say hi and welcome. And if you need anything just let me know.

Take care,
Laura

[knowamiracle]

Vetty, your story of you neice took me back a couple of years ago to when my sweet grandson Noah was born, not the same exact but Noah was said to have nothing in his little head.

Noah was born 10 weeks early due to Hemaphalius Influenza crossing from mother to child(extremely rare)caesing a grade IV/III bleeds.

To make a short story of a long story Noah's first 6 months were 27 surgeries mostly on his head and a few short stays at home but mostly in NICU and PICU, we all lived there, Noah, Mom, Dad and myself. Noah has 3 shunts, not revisions but actual shunts.

The doctors started telling us long about 2 months that there was little to no live brain matter in Noah's head, saying we should stop treating aggressively and let him go, meaning stop doing the surgeries, the revisions after revisions and externalizing due to infection.

We saw something in him they could not see altho small we saw there was something there, and we pushed to continue and have never regretted that decision.

The last surgery was at 6 months, and Noah is doing quite well. He has CP development delays and is still fed by a tube.

These days he surprises all in how fast he is learning, he doesn't crawl or sit by himself yet but we are sure he will, he can say words but that comes and goes, ask where his nose, eye, ear, mouth and belly button is and he will touch each one on his own.

Mostly I must say there is hope and that we have found that the brian can regenerate or compensate, Noah's NS is very pleased in what he sees in Noah.

Your neice sounds like a fighter, wishing her and your family good things to come, I will be sending prayers for a great outcome.

Aggie

[lacyndarella]

"Can 'damage' seen on MRI on a 4 day old baby 'heal' itself?"

Nothing heals itself; God is in charge of that! Whatever your faith, trust in miracles...she sounds like a real one!

[jkidd]

My baby was born w/ a Grade IV brain bleed. She didn't have damage to those areas, instead they found her right lateral ventricles, a portion of the brain near the r. hypothalamus, midbrain and part of the spinal column filled with blood. She wasn't given very good odds but she has really pulled through and just passed her Hs school Englis exit exam.

I have a couple of words of advice:

Make sure that baby gets enough omega-3 oils. If mom is going to breast feed then she shuld be taking fish oil, other wise choose formula with added, eicosapentanoic acic (EPA), docosahexanoic acid (DHA) and arachodonic acid (AA.) Babys' brain is STILL GROWING even after birth. It is busy adding neurons for four months afterwards, and adding myelin for YEARS after that. Since DHA is a large part of fatty brain tissue, it makes sense that a good dietary source of DHA is necessary. I'll see if I can find a good source.

Never lose hope. Baby is doing better and better. Keep the faith.

[Kamie]

My daughter had apgars of 1 and 4. She had a grade IV IVH and damage to the right cortex. Prognosis upon leaving the NICU was she would never walk or talk.

She is doing both.

I agree with all the advice you have been given so far. I also want to add that PT, OT, Speech, and Visual therapy have been key to my daughter's sucess.

The scar tissue from Zoe's damage is receeding according to our neuro, but she still has seizures and some delays. But I will take a few delays over the original prognosis.

[Vettey]

Thank you all so much for your replies. We know we have an amazing little girl who has shown her fighting spirit.

I am looking into the hyperbaric oxygen therapy, and seeing if we can access it for Jasmine. Have any other people used this therapy?

I will also check out the fish oils. Is there a brand you recommend?

I am heading to the hospital after work, to see baby and Mum, and find out the latest.

I am also going to print these posts out for the family. It is lovely to see the support from folks who have been down similar paths.

Thanks again,

Vettey

[mom2lydia]

We did a little bit of hyperbaric therapy and saw some improvement, even though my dd's brain injury was years old at the time. I understand that it has the most effect when done shortly after injury occurs. A friend of ours did it extensively with her daughter shortly after she had a drastic develomental decline due to chemo toxicity. Her improvements were amazing.

Hyperbarics are just so expensive. This is why we haven't done it more extensively. If the family can afford it or raise funds this sounds like it would be a promising senario for benefits (based on my research as a mom).

I'm so thankful that mom and baby have you as support. The research and advocating you are doing for them is awesome!

Hugs to all!

[Tracy Sheppard]

OMG reading your post was like living Megan's 1st days all over again.
I have such a long response to get back to you with, right now I have to get my preschooler ready and off to school. I will be back this evening when I have time to post in depth.

[Tracy Sheppard]

When Megan was born she suffered a severe brain injury due to lack of oxygen. The medical term we 1st heard was HIE (Hypoxic Ischemic Encephelopathy). Megan was paddled and bagged for about 14 mins, she was on life support and the CT scan was completely black. The only thing you could even see was the brainstem. They told us she was brain dead and would not live. We had to make the gutwrenching decision at 6hrs old to remove the machine. We too had the christening at her bedside with family and friends. THose first 48 hrs after removing her from the respirator were touch and go. Her heart rate would plummit to 20, I would pick her up and rub her cheek and it would go back up. We played this game for about 48 hrs. She also had a ng tube. They said she would never see, hear, smile or even swallow her own saliva. About day 4 or so we started her with the pacifier, and she sucked on it, so we started trying bottles. At 1st it was quite scary had that horrible stridor sound. At 1st she was only able to take like 1 cc. Then day by day it got a little better. By the time we came home she was doing really wonderful in bottle feeding. Megan had horrible seizures in the beginning. The brain is a miraculous organ. It can be traumatized severely and after time parts of the brain that weren't damaged can take over and help for the parts that were. My best advise is this. We were told our daughter would die, and then told she would be in a vegetative state. She is now 12 yrs old. It has been a long road at times, she has underwent numerous surgeries etc. But, intellectually she is doing age appropriate school work. Physically she still has lots of challenges, she is non mobile, non verbal, has cortical visual impairment etc. But, she has came such a long way! She is just a miracle. Her will to fight since minute one is just an amazing testimony to how truly wonderful our Lord is. Don't give up hope, and don't let anyone tell you she will Never do this or that. No one knows for sure what the future will hold. Megan is an amazing young lady that has fought every day of her life to get to where she is now. We work hard everyday and it has paid off. Give that baby every opportunity no matter what professionals may or may not say. If any of you ever want to talk feel free to e-mail me personally. You will have to PM me and I would be happy to give you my e-mail. Know your family and this precious little miracle baby are in my thoughts and prayers.
Tracy

[Vettey]

Thank you again.

I have looked into hyperbaric oxygen therapy (HBOT), but unfortunately it is not available in Australia.

The baby has been moved back to the hospital where she was born. This is closer to the Mum's home, and support.

She had a pediatric assessment today, and they found that she has no startle reflex. Can this develop over time?

If all goes well, she may be going home tues or wed this week. She is still feeding well from the bottle.

Thanks Tracy for your story. I have followed Megan's story over the years but hadn't heard about the begining of her story.

Take care all,
Vettey

[Scientist Bill]

Rigidity and spasticity are pretty common with injuries to the motor areas of the brain, because one thing the brain does is to inhibit the activity of the nerve cells in the spinal cord that control muscles.

both motor cortex and basal ganglia help control movement. Cortex controls voluntary movement. Basal ganglia control things like smoothness of tracking movements, involuntary movements etc. Injury to basal ganglia can often give symptoms like tremor, jerky movements, etc.

It's very hard to predict congitive effects of damage like this, because the MRI can only assess visible physical damage, not functional damage. One thing to remember is that motor problems can lead to underestimate cognitive function, because of the way many tests are done.

The immature brain has an amazing ability to recover from damage, much better than the adult brain, so the mantra for therapies is "the sooner the better".

From personal experience with my son, I would say that the main risk of hope, therapy, etc, is to the psychology of the parents. People who give up aren't often disappointed, even though the progress may be less than for those who refuse to give up and are disappointed when everything isn't fixed completely. It's a tough road. And remember, it's a doctor's job to be pessimistic because that doesn't raise false hopes. Often they're right, so I always try to assume that things will be better than they say, but not to count on it.

[purplegrrl]

I have looked into hyperbaric oxygen therapy (HBOT), but unfortunately it is not available in Australia.

There is ONE place in Australia that provides HBOT (other than for the limited range of conditions approved by the goverment, anyways).

It's the Hyperbaric Foundation of Australia (http://www.spinalrehab.com.au/hyperbaric%20foundation.htm) / HyperMED (http://www.spinalrehab.com.au) in Melbourne. I know nothing about them other than what's on their website and pamphlet, tho... a friend of mine got their info, but didn't proceed with the treatment at the time.

[Mom2Ava]

And remember, it's a doctor's job to be pessimistic because that doesn't raise false hopes.

Sci Bill, how depressing! Not only for the poor parents, but for the poor docotrs too!:(

[Vettey]

Thanks SciBill. Your explanation was really clear.

Has any body has a child who had no startle reflex initially, but this kicked in later?

What are the implications of having no startle reflex?

Thanks for the HBOT ref Purplegrrl. I will look into that further. Have you tried HBOT?

Take care,

Vettey

[purplegrrl]

Thanks for the HBOT ref Purplegrrl. I will look into that further. Have you tried HBOT?

I haven't, and I don't personally know anyone who has... while HBOT isn't completely inaccessible here in Oz, it's certainly not as widely used as it seems to be in the States.