When I started my blog almost 18 months ago, the main reason was to keep my friends and family updated on our little Matthew man. As it evolved; I hoped that someday maybe someone would happen upon my blog that was desperately looking for hope and answers after a diagnosis of hydrocephalus. I know one of the first things that I did after our ultrasound that day was to torture Google. I googled and googled; for hours, clicking and chasing bunny trails on the internet. I found some interesting blog sites and message boards. I have been blessed to live in a day and age when this information is so readily available. I've always wondered if anyone out there has found my blog in a similar way. I've often wanted to 'write them' and encourage them to keep their baby and not give up hope. All too often these days, couples are counseled and often strongly encouraged not to give babies like Matthew a chance. They are given the choice to play God, (which I don't believe is a choice, by the way..it's not my choice to decide the days of another innocent humans life).
Recently, on a message board I belong to, in which the members are those whose children have been affected by hydrocephalus, I gave my opinion to another expectant mom on this very subject. And after I re-read it; I knew that this is what I wanted every mom that finds my blog to know. So I'm editing it a bit, and I'm going to post a link to this post on the sidebar of my blog; so just in case someone finds my blog and is searching for hope and the answer for what they will choose; maybe I will be of some help.
If you have found my blog because you are searching for answers after you've received a prenatal diagnosis of hydrocephalus, I've written this with just you in mind.
First of all, let me give you a little back round. My son Matthew is 15 months old. We received his diagnosis at 20 weeks gestation. Unlike some of the 'doom and gloom' other parents have received after the 'hydrocephalus diagnosis", our perinatologist was very optimistic. He said that while there really is no way to know his future, MOST of these kiddos with this diagnosis do remarkably well, and are caught up developmentally by school age. He also said that there would probably be some sort of learning delay or disability; but plenty of other children who are born under typical circumstances can have the same issues. We clung to those words of hope, and my pregnancy was pretty uneventful, and I was very hopeful that we would be in the "MOST" category. While I worried a bit, I don't feel like I was fear-filled. I researched, I educated myself, I met lots of great people on the internet going through similar circumstances.
Matthew was born in May of 08, shunted the day after he was born and we took him home after 10 days. He did awesome. He was completely breastfed and everyone marveled that he seemed so 'typical' (quote un quote normal) At 2 months, he started having seizures, at 4 months, infantile spasms. By nine months, all the medications we were forcing in his mouth 3 times a day gave him a huge oral aversion. He ended up with a g-tube for his meds. At 12 months of age, I could not calorically keep up with his needs, and he quit gaining weight. Since he would only breastfeed, and not eat by mouth (due to the oral aversion of anything but breastfeeding) we started giving him formula in his g-tube. By 14 months of age, he was getting all his calories by tube and quit breastfeeding.
Matthew is developmentally delayed. He doesn't sit up, he doesn't roll over, he is visually impaired.
And our perinatologist is right, most kids with hydrocephalus do end up doing remarkably well, but I do believe Matthew has ended up having more struggles than the average child diagnosed with hydrocephalus.
Now that doesn't quite sound like the happy ending we were hoping for, does it? I beg to differ. Sure, it's not what we'd hoped and prayed for; but I believe we are far more blessed and than if we'd received our pre-pregnancy 'dream'. We cherish every day. We have learned to cherish the small things; the milestones other parents may not make as big of a deal about because it's expected. He notice EVERY time Matthew smiles, we get excited when he reaches for our faces. We coo back at him every time he makes a noise-no matter where we are; he is never 'shushed' for the sweet noises that come from his lips. We cheer when he lifts his head off the ground. When he's sick in the hospital, we cheer when he bats the oxygen tubing off his nose, because we know it annoys him and it is a sign he's getting better.
Here are some other things I would like you to know:
#1 Ultrasounds are not a definitive diagnosis for a child's life; especially when you are talking about the brain. There is a large variance. The brain has an amazing way of rerouting and rebuilding itself. You can get a bad prognosis and they can be WRONG! and vice versa. NO ONE KNOWS; they can speculate, but no one knows!!! And even if they only have a 'ribbon of brain' that 'ribbon' can make up for what is not there. Every doctor will tell that there is alot that is not understood about the brain.
#2 Just because Matthew is visually impaired, developmentally delayed, gets his nutrition through his g-button and not his mouth does not make him unable to participate in life. He is most loved and happy baby I know. He is a pure joy to our family and he enjoys life just like the rest of kids his age. He is held, he plays on the floor, he cries, he gets his diapers changed. Sure he has struggles; but so do all of us. I have given ALL of my children a chance to have a happy life; not ONE of us is guaranteed a tomorrow, much less an easy life. Just because all my other children were born 'typical' doesn't guarantee them to 'be like other kids'. There are lots of variables in life and childhood. NO GUARANTEES.
#3 I have personally been in contact with 2 moms who were given grave diagnosis for their children; but whose kids are 'typical' and the doctor's were wrong. Not that that matters to me though. Life is life. No matter how many days you have; it's still life. Whether you live 1 day or 100 years or anywhere in between, it's still LIFE.
Would I change the ways things are? Well, that's a loaded question. I would love to not have any of my children have struggles in life, whether it be medical, physical, psychological, educational, or make poor decisions and anything otherwise. All moms want that for there children. I would take away their struggles if I could. BUT I CAN"T. It doesn't make their life any less worth living.
Do I love Matthew less or think he has a 'grim' life because of his struggles? ABSOLUTELY not!! He in some ways has a better life than others. He is the closest thing to an angel that I'll ever get to meet on this earth. He doesn't know jealousy, hate, and he's doesn't pass judgement on people. He loves unconditionally. And I am BLESSED and privileged to be his mommy! I AM THE LUCKY ONE!!! Not all moms get this chance!!
So my advice to you...you were given this child for a reason. Love him for all the days of his life; whether that life be hours on this earth or decades. Love him whether or not he has struggles. He will bring you joy beyond measure. Will you cry?, yes; will you at times be frustrated?, yes; will you wonder how you will do it?, maybe; will you regret giving your baby a chance??? I think the answer will be NO!