IVH: When we knew our son would have special needs

At only 3 weeks old, X had already dealt with a lot of complications. We'd just learned about his PDA . The second complication that X's doctors had been monitoring was IVH (intraventricular hemorrhage). IVH is, in very simple terms, a brain bleed.

IVH is especially common in babies born before 30 weeks gestation because their blood vessels are extremely fragile and sometimes not even fully formed yet. The vessels don't begin to get stronger until after 30 weeks. X was born at 25 weeks which put him at higher risk of developing IVH.

IVH has different grades: 1, 2, 3 and 4. Each grade is an indicator of how severe the bleed is. Having one IVH, or one bleed, doesn't necessarily mean there will be more, but if there's more than one bleed, each is assigned it's own grade. Here's a little about each grade:

Grade 1 IVH: This is the least severe of the bleeds. It happens within a very small, confined area

Grade 2 IVH This grade of bleed is also not severe. The bleeding is still contained within the ventricles.

Most babies who experience a Grade 1 or Grade 2 IVH go on to develop with little to no complications. In fact, most of the time you'd never know they'd had a bleed at all

Grade 3 IVH: This bleed is more severe. The ventricles to become enlarged by the amount of blood. Grade 3 can result in hydrocephalus (too much fluid in the brain) and possibly even long term brain injury.

Grade 4 IVH: This is the most severe of the grades of bleeds. With grade 4 bleeds, the blood not only enlarges the ventricles, but it it goes into the brain matter. This can lead to a number of problems that can include hydrocephalus, cerebral palsy, hearing loss, vision problems, learning disabilities, etc.

Different grades of IVH

In X's case, he had two separate bleeds. The medical terminology we use when documenting his bleeds for his medical records is BILATERAL GRADE 4 IVH. It's a fancy way of saying he had a bleed in the first ventricle of his brain, a secondary bleed in the second ventricle and both of them were Grade 4. There's no way to treat IVH or to stop it from occurring. If it happens, it happens; if it doesn't, then it doesn't.



If I said we weren't scared and sad..even devastated...when we first learned that not only did X have bleeds, but they were grade 4, I'd be lying. No parent wants to hear that their child will most likely have long term problems because of a complication that couldn't be prevented.

We spent the next couple of days letting family know the diagnosis and X's potential prognosis. Those were hard conversations to have. Then, we started to educate ourselves. We spent a lot of time in the medical library at the hospital. We talked to the doctors and asked questions. We found support groups online and talked to other parents who were already where we were going. Eventually we posted about it on social networking. After all of this, we knew that X would be ok and so would we. We also knew at that point that X would have special needs.

So fast forward to now: Yes, X has special needs. We're still figuring exactly what his "normal" is. It may still be years before we really know what his needs are and what his abilities will be. Here are just a few of the things we know about (and we'll talk about them in more detail in future posts):

Mild Hydrocephalus
Developmental Delays
Optic Nerve Damage

The main thing we have learned is that these diagnoses DO NOT DEFINE X! Sure, they're part of his life. The truth is at the end of the day, all most parents want is for their child(ren) to be happy and healthy. X is both of those! He's very happy. He laughs and smiles all the time. He loves to interact with people. He's very social. He loves to play. He rarely cries or is unhappy. X's joy and zest for life is so contagious! He's also healthy. The conditions he has don't impact his overall health. He's growing bigger and stronger every day.

X's reality is this: He doesn't yet sit independently, crawl, walk, feed himself, etc. The key word is YET. We're working on these goals. He continues to progress and astound his medical team. The truth is, at the end of the day, those things don't matter. If he never did any of them, that's fine. X isn't a "typical" 1 year old in many ways. That's ok, too. We've had time to adjust to life with a child who has special needs. Most other people haven't. We promised him a long time ago we would never give up on him and we'd give him every opportunity we could for the fullest life possible. We've done our very best to keep those promises. No matter what his challenges are, he has possibilities; and that's all he needs!