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I was still new to the NICU scene when she had her first brain scan. She was only a week old when we first heard the words ” Grade 4 IVH “. That put her at 26 weeks +5 days gestational age. She was still eleven and a half weeks from being considered full term.
We hadn’t received anything but middle-of-the-road news on how she was doing since she was born, although we hadn’t yet received any test results. So, when I called to find out the results of her brain scan from that morning, it seemed reasonable when the nurse said she couldn’t tell me anything, and it seemed reasonable when the doctor got on the phone and said they didn’t give results over the phone. What I didn’t realize (or was in denial about) is that when they say they can’t give you the results, they mean the results are not good. They want you to come in so they can sit you down and explain what they are saying.
I still couldn’t drive after my c-section, so my husband was dropping me off at the hospital to spend time with the baby, on his way to coach. We dropped my son with his grandmother early that day, because we knew we wanted Adam to come in to talk to the doctor with me. The next bit is kind of a blur to me.
We walked in and said hi to Alice while the nurse went to tell the doctor we were there. We sat down with the doctor and he started to tell us what was going on.
An Intraventricular Hemmorhage (IVH) is graded 1, 2, 3 or 4
Grades 1-3 are similar, but varying in degree. When you have a 1, 2 or 3 the bleed is contained in the ventricle. It can be unilateral (left OR right side) or bilateral (both left AND right sides), and the degree is based on how large the bleed is, and whether the ventricles are enlarged. (Grade 1 being the smallest.)
A grade 4 means that the bleed has extended outside of the ventricle, or it started outside of the ventricle.
Grade I – bleeding occurs just in the germinal matrix. Grade II – bleeding also occurs inside the ventricles, but they are not enlarged. Grade III – ventricles are enlarged by the accumulated blood. Grade IV – bleeding extends into the brain tissue around the ventricles.-Wikipedia
The doctor explained the differences in each grade, and while he spoke I focused on his mouth.
He had a thick accent, and I kept having him repeat things to make sure I understood. Brain bleed. Grades. Both sides. Grade 1. Grade 4. Don’t know the prognosis. Keep monitoring. Don’t know. Won’t know.
I am not sure how much I didn’t understand because of his accent and how much was because of my spinning head. The doctor was telling us our child had a grade 1 IVH on one side, and a grade 4 IVH on the other. Then he said they were going to do a follow up scan the next week, because sometimes it looks like a hemorrhage but it winds up being nothing.
It wasn’t nothing.
I went home from the hospital that day with Google on the mind. I googled everything I could think of, from simply ‘grade 4 IVH’ to ‘problems stemming from a grade 4 IVH’ and ‘chances of a severe disability from a grade 4 IVH’. Depending on the day and the exact phrase I used, google gave me highly varied results. Nothing that made me feel like I had an answer though.
What I really wanted to ask Google was, “Will my baby be ok?”
Unfortunately, Google is not a fortune teller or a psychic, and just as all of the doctor’s liked to repeat to me, you won’t know until you know. If you get to school aged, (about 6 years old) without any issues, then you are probably all clear. There won’t be definite answers until then though.
So, as she grows I am looking for any sign of delay; emotional, learning or physical. With any intraventricular hemorrhage, it could effect various areas of development. However, as I’m sure you’ve concluded already, the occurrence and severity of disabilities is much higher with a grade 4 IVH than a grade 1. With either though, there is no telling when disabilities may become apparent.
As a mother, this is one of the most difficult things to wrap your brain around. ‘My child has a condition that makes it quite likely she will have some sort of developmental disability. I won’t know until it shows itself. There is no way to help unless it presents. There is no way to help prevent it.’
I have to say, I held myself together very well through her early entrance into the world. Except for the day that we found out the scan was correct. One week after being told what a grade 4 IVH is, we heard the results of her follow up scan.
I had a 1.9lb baby in the NICU, and I was reading articles about grade 4 IVHs and mortality rates.
I was reading about developmental disabilities that required 24/7 care into adulthood and cerebral palsy. My brain raced from one thing to the next and I broke down.
How could I handle not knowing?
How will we explain these things to Quinn?
What if I can’t help her?
What if I chose wrong?
What if she is miserable? Has a severely effected quality of life? Is in pain forever?
At 27 weeks gestational age, you don’t know your baby very well yet. I would say it almost makes it that much harder to deal with these thoughts. You haven’t seen yet, how strong and resilient they are. You haven’t watched them survive through the odds yet. All you see are the “what ifs”.
Possible “what if’s” of a grade 4 IVH (not an all-inclusive list)
Hydrocephalus-increased fluid in the brain
Cerebral Palsy
Seizures
Decreased reflexes
Severe developmental delays; including motor skills and speech
Possible death
These possibilities are not all inclusive, and the more you scour Google, the more terrible things you can find. Luckily, as you are digging through pages and pages of gloom, there are also pages and pages of hope and positivity and miracles of science. Babies are beating the odds over and over again. I didn’t let myself get my hopes up, because ‘what if?’, but I let it keep a light in my thoughts.
Over time, I came to terms with the unknowable. I slowly stopped googling and worrying and searching for signs of terrible. I came to accept “you won’t know until you know”, and focused on the baby right in front of me instead of what this baby might encounter.
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The best tips from doctors
We saw a lot of doctors between two NICUs. Several of them had words of wisdom for us on what we could do for Alice. All we want as parents is to know we are doing everything we can, so these tips were a big step in getting past “What now?” They certainly helped us feel that we were helping, or at least doing something.
Treat your baby like a regular baby. Meaning, when you are with them, talk to them and interact with them as if they didn’t have a brain bleed. This step can take practice, stern self-talks, and heightened self-awareness, but can also be a huge step in feeling better yourself as well.
Read to your baby. Mostly, it is importantly that they hear your voice a lot. Don’t worry about reading something ‘age appropriate’ as they can’t understand your words anyway. They can sense your mood and like to hear your voice. I read Harry Potter to Alice. We got through all of the books before she came home. (I totally cheated and read at home sometimes. Shhh…. don’t tell her.) It was perfect because I enjoyed it, and it kept my thoughts off “what if’s”.
Ask for Kangaroo Care. Kangaroo care is just a fun and fancy way of saying, holding your baby skin to skin. It has been proven that skin-to-skin contact is highly beneficial for premature babies. That goes for mom or dad. (A baby knows mom from the inside, but actually knows dads voice better! Voices from outside the body come through more clearly.)
While none of this is guaranteed to prevent complications from a hemorrhage, it’s all been proven to be beneficial.
To those of you going through this now, I wish I could tell you it’s easy. Or to follow these steps and you will feel better. Unfortunately, there’s not a specific thing that will help that feeling of need to know, “what now?” Except time.
Which is the least helpful answer, I know.
The book, Preemies: The essential guide for parents of premature babies, was like my bible through our 3 months in the NICU. It helped me more than most pages I came across from google. I highly recommend it if you have a premature baby in the NICU.
If you would like to see how Alice is doing these days with her grade 4 IVH, follow me on Instagram: @owlbeme
Is your baby in the NICU? Here are some common terms to familiarize yourself with, that will help you feel more comfortable talking to nurses and doctors: Six NICU Terms Every Preemie Parent Should Know
Not sure how often you should be in the NICU with your baby, or starting to feel guilty because you can’t be with them all of the time? Are you Spending Enough Time With Your Baby in the NICU?
FAQs about the NICU written for NICU Awareness Month: September is NICU Awareness Month. Here are the FAQs.
To read more of our story and other articles on prematurity, check out Preemie Life
Oh my goodness. My heart goes out to you.
Thank you, Michelle!
Hi there. Our son now 24 yrs old was born at 26 was. He had a grade 4 bleed. The neonatologist suggested we let him go should his ET tube become dislodged again. I’m happy to say that is not the other we chose. He is graduating from college this year. He regularly runs 10 miles a day. We couldn’t be more thankful for our decision not to listen to the expert that day.
Good luck to all u preemie parents!!!
Dear Connie,
You just lifted my hopes a lot for my friend’s baby who was born at 26 weeks and has grade IV bleeding. He is showing slow but steady developments at age about 12 months now. He cannot sit without support for long or stand without support at all. He can roll over. He has a shunt. Did your son face any developmental challenges? Especially motor skills?
I am very proud of you and your son. May god bless you.
I have just lost my beautiful princess who was only 3 days old and born 27w4d. She had grade 4 brain bleed and 3/4 of her brain was in bleed. Doctors didn’t give us any hope for even survival. They told us even if she pulls it throught blood transfusion she will be disable and will not walk, talk and will have all kinds of disabilities. They rushed us to make a decision to take her off life support. I wish I read this miracle stories before we made our decision. I feel gulity not letting her fight for her life.
First, I am so sorry for your loss!
Next, I want to tell you a bit more about Alice to hopefully ease your heart. Alice was, from the beginning, “feisty”. That’s what the nurses called her. She had a grade 4 ivh, but it was not growing, and it did not cover that much of her brain. She was always responsive and even at the beginning tried to breathe on her own- she just wasn’t strong enough yet- but the effort was there from the start.
It sounds like your baby had a much larger bleed. I of course, don’t know specifics, but it sounds like the extent of your child’s bleed is what led the doctors to recommend taking her off of life support. Even now, with Alice’s much smaller grade 4 bleed, we have her in all sorts of therapies.
I can’t imagine the pain you are in, but please don’t be so hard on yourself. Remember, if blood was in 3/4 of her brain, she would only be working with 1/4 of it- no matter which quarter that is, it’s just not enough.
Remember, that you saved your baby. You saved her from innumerable surgeries, therapies, life long interventions and most likely, life long pain. You did the hardest thing that could be asked of a mother, but it was absolutely the best thing you could do for her.
While there are a lot of success stories, there are also a lot of heartbroken stories. And every story is so very different. Every diagnosis and every case is so very different. I truly believe that if your doctors thought this was best, that it was. And you made a difficult, heartbreaking decision to serve your child above your own want for her to stay. You saved her.
I am so sorry for your loss and heartbreak.
How is your baby now? My baby was 28 week preterm diagnosed with the same and fighting strongly for 6 weeks now.
Really good article. My 25 weekers didn’t have IVHs, but I want to second the book recommendation. “Preemies: The Essential Guide for Parents of Premature Babies” – I leaned on this book throughout our journey and I now gift it to anyone I know with a premature baby.