Grown-up preemie who survived Grade 4 brain bleed

For you NICU parents out there, you know what I'm talking about. If you are not an NICU parent, this is what that means:
A Grade 4 brain bleed is layperson speak for a "Grade IV intraventricular hemorrhage," bleeding into the brain's ventricular system. It's very common in premature babies. Most brain bleeds occur in the first 72 hours after birth, and the use of oxygen (critical for extremely premature babies' survival) increases the risk. Brain bleeds come in four levels. Grades 1 and 2 are the most common, and often result in no major complications. Grades 3 and 4 are the most serious and can result in long-term brain injury (blood clots forming, blocking the flow of cerebrospinal fluid and increasing fluid in the brain) or death.
I vividly remember the nurses and doctors repeatedly telling us how lucky we were that our own 24-weeker, Chris, did not have a brain bleed. They considered it quite the miracle, since he was born at the edge of viability and had a much higher chance of having a brain bleed than older preemies.

Parents of preemies who have Grade 4 brain bleeds are not given much hope for their beloved babies' survival or "positive long-term income" (doctor speak). So when I read this story about a young woman who had a Grade 4 brain bleed and lived to tell the tale, it brought tears to my eyes...and I knew I had to pass on the story from the It's a Preemie Thing blog.

Shannon Harper, now 27, was born 3 months early weighing only 2 lb., 12 oz. and measuring 12 inches long. Because of her brain bleed, she has endured three shunts (to relieve pressure on her brain), 13 shunt revisions, mild cerebral palsy, heel cord surgery, years of physical therapy, and two "exploratory" head surgeries (a total of 18 surgeries).

She is now not only an NICU grad but also a college grad and works as an educational assistant, helping children who struggled with some of the same challenges she did.

I knew parents who faced the agonizing life-or-death decisions involved with Grade 4 brain bleeds. We faced that same decision ourselves when Chris (1 lb, 6 oz., and comparatively long compared to Shannon at 11 inches!) had cerebral edema and low flow to the brain...before he completely turned things around the next day. Parents just have to hope, when making those decisions, that their precious ones give them some kind of a sign that they are ready to go.

One of our favorite NICU docs used to say "Never trust a preemie." That has proven to be true. Some of the preemies who have the most horrific NICU stays imaginable (including Chris) have relatively unscathed childhoods and grow up to be healthy and independent like full-term kids...while others who have comparatively easy NICU courses face more challenges and developmental issues. I know other parents of preemie kids can relate that just when you think you are in the clear, something new pops up.

On those days when Chris couldn't keep a thing down and vomited everything he ate (bad reflux)...and I was worried he'd be labeled with the dreaded "failure to thrive," or when he didn't walk until 15 months adjusted (19 months actual age), or he didn't talk until he was three...I clung to every shred of hope I could find.

I love stories like these...that can offer hope to parents that in spite of the odds...and the depressing statistics...things can turn out okay in the end. You can just tell, looking at Shannon's smile, that she loves life and knows that she is a success story. Isn't that what we hope for our children?

Comments

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    1. Thank you for your courage. My daughter was a 24 weeker and had gone through the same preemie issues. She just turned one in January but corrected will be one in April. I have always wandered if my child will turn out to be independent. thank you for encouraging me

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  2. Thank you for your comment, Catherine. I thought you might like to read the story about my 24-weeker, Chris: http://marie-everydaymiracle.blogspot.com/2007/08/happy-birthday-beautiful-boy.html. I wrote it when he was 11, and now he is 15, almost 16!! He had a rough first year or two, but now he's doing great. He's a freshman in high school.

    I'd love to hear more about your little girl!

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  3. LOVE HEARING STORES LIKE THIS;)

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  4. I HAVE A 10 MONTH BABY BOY WHO HAS A GRADE 4 BRAIN BLEED ONE OF THE STRONGEST BOYS I KNOW HE (BABY ANTHONY)MADE IT HE'S SUCH A HAPPY BABY ALWAYS SMILING GOO GOO GAGAS.... N JUST RECENTLY IS SITTING UP FOR A FEW MINUTES ON HIS OWN HE MAKES ME A PROUD N BLESSED MOTHER HE'S MY ANGEL ;)

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    1. Thanks for stopping by my blog, Anita. I am praying for a baby with a Grade 4 brain bleed who's still in the NICU right now. Bless you!

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    2. UR VERY WELCOME . MY PRAYERS GO OUT TO THAT FAMILY WITH GOD ALL THINGS ARE POSSIBLE ;)

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    3. Did his brain ultrasound show cell death as the bleed began to drain?

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  5. This really touched my heart. My baby boy was born at 24 weeks and found out today he has bleeding in the brain grade 3-4. He is doing great on everything else and I was thinking why my son. I almost cried then I thought to myself that they don't know who has the last say so (God) and they dont know how strong my son is. I know it's going to be a long journey but Im looking forward of my son coming home to me.

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    1. I am in this situation now. It so sad that the doctors asking whether we want to continue on whatever they are doing to keep our baby stable, while we are trying to stay strong for our baby. Reading all the post here sure make me to fight for my baby boy, who was born n 29 weeks with 2 lbs 2 oz and 12 inches. God bless all babies in NICU.

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  6. U best friend had twins early one boy and one girl. The boy Jaxson is a grade 4. We are hoping and praying that everything turns out well. Thank u.all for sharing your uplifting stories.

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  7. My son was born at 30 weeks and weighed 1490 grams. He developed grade 4 brain bleeds in his first days of life. We were given the standard talk about the unpredictability of the outcome. Long story short, he is now a 28 year old college graduate with a shining Law Enforcement career. He's smart, funny and a joy to know. He was always small, but he was tough. God bless you all struggling to understand. Have faith and stay strong.

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    1. Thank you so much for your encouraging words :-)

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  8. i just gave birth to a 3 pound 7 oz beautiful baby girl on Christmas day. She has progressed a lot, then they told me she has a grade 4 brain bleed. I can only look at the positive things that have happened and only hope and pray she will be ok. She was removed from oxygen and put on cpap the second day, she then was removed from cpap on her 4th day and has not had to be put back on either! Her feedings are increased everyday and she is now off her phototheraphy light and ivs. The drs had another ultrasound done and the bleeding has not changed not worse but not better. I am truly hoping for a miracle. thank you for sharing your stories they gave me a little comfort! please pray for my little Kaylee. thanks

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    1. That's what they had told me my son was 2months early and he has a grade 4 and 3 bleed in his brain they said it hasn't GT worse hasn't got better it's stable keep trying to tell me about the things that could happen in his near future someone plz help

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  10. Aww thank you for giving me hope. My grandbaby was born @23 weeks weighing 1lb 6oz 12 inches long. She has been through alot she has had a pulmonary embolism, stage 2 and stage 4 brain bleed, staph infection, and now a colostomy bag because her intestines had a hole.

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  11. Please pray for my 24 Weeker, he was born weighing 1lb 1oz. His brain scans are inconclusive and he has no movement right now. I know God is able however when talking to Doctors it cam be very hard. Keep us in your prayers this is my second preemie that is 24 weeks , I know that it is a hard road ahead. I am not giving up hope no matter what!

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  12. Thank you for all your comments...I'm so glad this post has touched so many of you and given you hope. My 24-weeker is now 19 and a freshman in college, so there's always a cause for hope!

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  13. My daughter Alyssa, was twin B born at 28 weeks weighing 2lbs, 13 oz. She had a grade IV IVH in her left hemisphere and a grade III IVH in her right hemisphere. I was told that she would be severely mentally and physically disabled, blind and deaf and that I should consider DNRing her. She had her first shunt surgery at 1 month old. The day I was given the devastating news she was 6 weeks old (34 weeks gestation). I was burping her after a feed, not talking to her as I usually did. A nurse came in and started to talk to me, when I responded to her, Alyssa lifted her chin off my hand and looked at me. At that moment I knew that the doctors were wrong. I knew that she could see and hear me and there was a sparkle in her eye that I knew she was not going to be severely mentally disabled. She was still preterm, she should not have had the strength to turn her head let alone lift it off my hand! She learned to walk with a walker at 2 and a half, toilet trained at 3 and a half, walking without a walker at 6. She has issues with her speech because her tongue is affected by the cerebral palsy but she still started talking a mile a minute by two. She is now 10 and has had 3 shunts, 4 revisions, she has a seizure disorder, and she has botox injections in her legs every 3 or 4 months. She also swims with the local swim team, she is able to swim all 4 stroke., She has won 9 awards at school and in swimming. She wants to be a nurse when she grows up. She has reading and math learning disabilities but she does not let any challenges get her down. She is a happy girl who attacks any challenge with determination and a strength I don't see in many other children her age. She inspires me every day to be the parent she deserves. She truly is my miracle baby.

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    1. What a wonderful story! I'm so glad to hear Alyssa is doing so well, considering, and that she has big dreams. Love it! Best wishes to you. Preemies rock!!

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  14. My baby has a grade 4 bleed. Unfortunately I considered the worse since doctors told us the worse. After reading all these stories, I know anything is possible. Thank you for the inspiring stories.

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  16. These stories have helped me. Just learned today my baby has grade 4 bleeding on the left and right side of his brain. A very sad day but I'll continue to pray. I love his life.and thanks everyone for sharing your stories.

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    1. I'm glad the stories have helped you, and I hope your baby had a positive outcome. So scary.

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  18. my brother in law's wife has given birth to a baby girl on 21st Dec 2016, for first day she was fine and later we came to know that she has bleeding in her head , doctor says she will not be normal but she is very lethargic and opens her eyes for a very short time . Can she could be fine?

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    1. It's possible...there's always hope! But sometimes our little ones indicate to us that they just can't fight any more. Sending you prayers and positive thoughts!

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  19. My baby have 4grade hemorhage she is fine untill now she is one month but I hope she become ok and didnt need any surgury or develop hydrocephalus what do you think?

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  20. Hi, I know a Mom who could really be helped hearing your story. Her baby is Miles. He is worst case scenario. 26 weeker with stage lV brain bleed and I think he is getting a shunt. She wants to hear if anyone else has been through this or if he will be the first. They are really going through a rough time and need to have some hope. The doctors said he will more than likely have severe disability. If you have a story similar to Miles please find them on FB page strong for Miles and share. They really need to hear an inspiring story.

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  22. I had my son at 32 weeks I had pre eclampsia and had to have emergency c-section because of cord wrapped around neck, I was told today he has level 4 hemorrhage and also cerberal palsy he not sitting crawling or grabbing things my heart is broken and torn my first child n I'm so scared

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    1. I am so sorry to hear this, Scorpio girl. You are in my heart and thoughts.

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  23. Hi, my son born 24 weeks and he being in the NICU for 5 month already. He's a miracle because infections in his Gus, breathing problems etc. 4 surgery and he's being doing so good. God is good and love ours premiee babys.

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  24. Well, things like miracles do happen. My wife had a placenta previa problem which necessitated an emergency c-section at 30 weeks. My daughter weighed 3 1/4 lbs at the time and went down some in the nicu. After about a week (as I remember it now) the ultra-sound showed (apparently) that she had had a grade four bleed. After that, every day they were looking for more bad things to show up every day, hydrocephaly and so forth. Nothing ever showed up. The bleed just seemed to ... what's the word? dissipate? She's 23 now. She has a job in the back office at a major, well-known bank as a sort of accounting clerk. I taught her to parallel-park really well, but now she refuses to. She drives too fast for my taste and her boyfriend irritates my wife. In over words, she's rather normal and I sometimes find myself wondering if her ultra-sound was read incorrectly. Does that happen? Anyways, never give up hope. Sometimes a bad prognosis just doesn't come true.

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    1. Normal is amazing!! Congratulations.

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    2. I know we can count on Jesus in it all. My sister and I are miracles

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  25. My grandson was born on the 7th September 2017 he weighed 690grams he has a very strong heart and his lungs are working well and is down to 24% oxygen so he is breathing 76% for himself and the valve in his heart has nearly closed up completly so all are really positive and then friday night they said they have found 2tiny bleeds another scan Saturday shown no change hadnt increased or decreased tomorrow they will do another to see what's happening just praying that it hasn't spreed he is such a fighter - for me watching my 24yr old daughter going through all she has and not being able2 fix this for her and to not be able2 to take away the pain is devostatingly hard for me reading some of the comments does give hope but also gives you a big dose of reality

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    1. That is really tough. I hope your grandson is doing better now (and your daughter, too). They are lucky to have you in their lives.

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  26. hi.. im a mummy in a very distraught situation... my lo was born a week ago at 30weeks.. he is very ill due to a bad infection/bacteria that struck him... after a week of 100% oxygen... and all kinds medications seeing he is progressing... docs has cutten down most of the things n the oxygen level n his blood level has stabilize... and today doctor come back telling me he has head bleeding grade 3 n 4 in left n right.. Doc suggesting if would like to stop the machines n let him goes... my heart shank to hear that... as doctor mention there might be huge complications at his later development stage... chances of cp... any mummys gone through this.. pls help... im not going to give up on my Lo.. but im really praying for a miracle to happen..

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    1. Zaliyana, I'm so sorry to hear you're in this crisis. That is so scary. My suggestion, based on what I've heard from parents who have been through this, is to wait to see what happens in the next couple of days. Your little guy might give you some kind of signal to help you...either getting better or getting worse, which would make your decision a bit easier. This is such a horrific place to be in for any parent, and my heart is with you.

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    2. No..plz dont loose hopes.I am a mother of a warrior too with grade 4 ivh...born at 29 weeks in december 2017.My other twin boy was a still birth as they had to do emergency c-sec due to preeclampsia.this lit fighter also went on 100 % oxygen support but thankfully he is home now.looks like a normal healthy baby so far (if i ignore few small issues).one advise that i got from doctor today was to give him good stimulation physiotherapies so that in case (god forbid) there is a chance of delayed physical development or any challenges that can be taken care of well in advance.plz dont loose hope.

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  28. My grandson was born on 28 December at 26 weeks. He weighed 2lb 12 oz. He had a bleed to the brain on the second day, 3 on one side and 4 on the other. Today they think he might have an infection and are going to do a lumbar puncture. We Can't know what the future will bring all we can do is hope for the very best. Reading other people's stories is really helpful. Thank you all for sharing

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    1. I'm so sorry to hear about your grandson's bleed. I pray that he makes a good recovery. Keep your hopes up!

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  29. Hello, I found your blog on Google and I'm glad I did, offers me a lot of hope. I found out I was pregnant in February and delivered at 24 and a half weeks on March 8th. My son has a stage 4 bleed on the left side of his brain and a stage 3 on the right. He's currently being treated for meningitis, heart murmur, has a hole in his intestine he's being treated for also. He was spitting up blood that was in his underdeveloped lungs. Within two days after his birth doctor's told us he wouldn't survive and to make plans because they were certain he wouldn't make it. So far he has survived outside of my womb for nearly 30 days. Glad I looked up this info and it feels comforting knowing there are other parents fighting for their children's lives like I'm fighting for mine. Been riding on an emotional rollercoaster but I would ride it over and over for my first born son or any other children I'm blessed to have in the future. Thank you!

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    1. Thank you for sharing your story my daughter 27weeker born aug 29 2018is going through the same exact thing now 1 month old.. Praying for you hope everything has turned around as i know how hard this is to go through

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  30. My grandson was born 9-29-18. Six days ago. 24 weeks and 3 days. 1 lbs 8 oz and 12 in long. First 3 days he was max out on everything they can do. Ventilator, oxygen, meds. They said his brain was bleeding on Tuesday and nothing they can do to stop it. Just monitor it. They will check again next week. They fleeding him day 4 and his bowels moved (pooped). Slowly reducing ventilator and oxygen. Off the blood pressure medicine. Today off photo therapy light. The doctor today was so discouraging about the bleeding, saying he wouldn't have quality of life, might need to think about taking him off everything that he would have damage. That really tore my daughter up which tore me up for the both of them. Reading these stories are helpful. Thanks keeping all NICU babies in my prayers

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    1. My daughter is at Kaiser Permanente born 27 weeks 1lb 9oz on aug 29 2018 has had everything you mentioned. The drs also had the same talk with me asking me to consider letting her go. It broke me down entirely. I just pray everyday that they are wrong and i just stay positive god has the last word. Thank you for sharing its nice to know we are not alone in this world. Iam going to pray for you baby everyday along with all the Nicu babies in the world. God bless and feel free to share any updates please

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  31. My twin sister and I were 3 months early weighing 1 lbs and 15 oz. And 2lbs. Dr. Didnt think we would make it but Jesus breathed life into our bodies and now here we are 36 and are both married w healthy kids. There is hope in Jesus no matter what you go through. You can trust Him w your life. :) I thank Jesus for the miracle we are.
    God Bless
    Rachael

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  32. My granddaughter lily was born Feb 8th 2019, she has a grade 4 brain bleed she is stable for now she weighed 2 lbs 12 ounces and was born at 27 weeks and 4 days thanks for all the positive comments made me feel,a,little better about everything

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  33. Praying for all these little babies and their families! My daughter went into early labor and delivered via csection on 6-23. She was 23 weeks 5 days and her son weighed 1.8 lbs. My grandson was cut on his head during delivery by the doctor and required 3 units of blood. They were able to get the tube inserted into his lungs right away and his oxygen was 78%. He was transferred to another hospital once stable. My daughter pretty much discharged herself the following day and is with him now. She was informed yesterday he has grade 2 bleed on left side and grade 4 on right. He is being treated for high blood pressure. high blood sugar, and they are giving him fentanyl. He really responds to her voice and she's been reading to him often. She is also pumping and they are allowing her to swab his mouth with the colostrum. The doctors have told her and my SIL they may need to make a decision about continuing his "life support ". He had a scan today and his lungs look good. He had a scan on his brain but they have not told her anything, I guess they'll talk to her about it tomorrow as it's now almost 10pm. I'm sorry anyone has to go through this, but it is comforting knowing that there is hope for our little ones.

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