Feelings

Hi, this is Grace.  When Brent was first diagnosed with a heart defect, Dave had already been reading up on the possibilities of what the diagnosis and prognosis could be (based upon the description provided by the perinatologist-we didnt' have a name for the anomaly until we met the cardiologist, so we thought it could be Hypoplastic Left/Right Heart Syndrome).  So Dave knew more about what it would be like for Brent to live life with this defect.  Since I'm more of a visual person, I knew Brent's defect would not hit me hard until I actually saw some of what he would go through.  And that day was yesterday and today.

Dave wanted to prepare us for what may lie ahead for Brent.  Depending on how Brent's pulmonary artery and aorta are growing, there is a possibility that Brent would need open heart surgery within the first ten days of life.  He showed me this video of a baby who has DILV, like Brent, and who has already had some of the same open heart surgeries Brent will be having.  **Just a word of caution: it is graphic since it shows the baby's chest open.  The doctors have to leave it open to monitor the swelling, so do not watch the video if you think it would be too graphic for you.**  This video made me cry just seeing what that precious baby had to go through and what may be in store for ours.  This was the first time I cried since learning of Brent's diagnosis.  Dave had already seen it all and was already emotional about Brent's whole condition.

So, I have my ups and downs.  I remember taking my three year old with me for the first time to my chiropractor visit because Bryce makes me smile with all the cute things he does and says, plus he takes my mind off things.  So, the day after the cardiologist visit was a good day for me.  Today I was thinking about life spans, and I started Googling 'DILV mortality rates/life expectancy', and started crying again after reading that the mortality rate for people diagnosed with DILV is high.  I need to re-read the articles I found because I'm not sure if that's children who have had the last surgery (I think it's called the Fontan), but I did read that doctors are unsure of the life span of children with the operations because these operations were just invented 30-40 years ago.  Indeed, that was what our pediatric cardiologist Dr. Dyers, told us.  I was also reading some blogs and the comments under the blogs, and there was a comment from a woman whose child had DILV and I think had the surgeries, but did not make it past age 26.  I know that everything is in God's hands, but I still can't help but feel sad that our little guy may not live long and that we might outlive him.  But like I keep saying, we will love Brent for however long God lends him to us.

Then I saw this comment from the No Hands But Ours web site:

Kyle says:

April 4, 2014 at 12:41 am

I literally stumbled upon this website tonight while doing a little research and as I read I just wanted to give the parents (especially those with children with single ventricle hearts) a word of encouragement. I am believed to be the oldest surviving single ventricle patient right now, I am told I was the 4th person to have the original Fontan surgery (I have also had a Glenn) In 3 months I will be 45 yrs old and when I asked my Cardiology team several weeks ago at a annual check up “what is my life expectancy?” They just all kind of looked around until one of them laughingly said we don’t have any idea, we have no reason to think you are not going to be around for a while.

I assure you children today who are single ventricle can have a normal life expectancy, they may have some bumps in the road but modern medicine has made incredible strides in the last 40 years and it will continue to do so as your child gets older. That said I know I am unique and blessed in the fact that I have survived as long as I have, the truth is the Lord has had his hand on me my entire life, and without my faith and trust in him I would not be alive today. If there is one bit of advice I could give a parent of a child with a heart problem (or any child for that matter) it would be to encourage your child’s faith in the Lord, as well as your own. (Make no mistake, I assure you Jesus Christ is very real, I know that may not be a popular viewpoint today but it is the truth)

Also and this may be difficult for some parents who have a child with special needs, but it is very important for their development, treat them as if they were just as normal as any other kid. Trust me they know their limits, they do not need anyone to remind them. And finally be there for them, I know there is no doubt that I would not be around today if I would not have had loving parents. There were times when I knew my parents could not do anything to help my situation, except be there, but they were there, and that is the best thing you can ever do for your child too.

I didn’t mean for this to turn into an essay but I would be happy to answer any questions a parent may have about what they and their child can expect if they are single ventricle. My email is kylehosner at yahoo .com I look forward to hearing from you.

Thanks

Kyle

This was from one of the first ones to have the procedure done, and he is still alive!  Even though it is not guaranteed that Brent will have a long life, hearing stories like this gives me hope and I felt so encouraged.  I am reminded of Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."  I know this Bible verse was written to the children of Israel, but I pray that God also has plans on this earth for our little one.

Brent Ethan Dunlap, 24 weeks 5 days gestational age