One year old daughter passed away. Found out she had BAV.

[Crystal Barricklow]

My one year old daughter passed away two months ago. She passed away overnight and we had no idea what happened. They listed her cause of death as BAV, misplaced coronary arteries. Completely shocked us since we had no idea she had any heart problems. The coroner told me that it was her heart defects that caused her heart to stop. When I got the autopsy report it says she tested positive for a bacteria in her heart (entercococcus faecalis). But no one told me this. She had some mild symptoms for a couple of weeks, low fever, diarrhea, loss of appetite but when I took her to the doctor was told it was likely just teething and maybe a little bug but no big deal. And I agreed. Being my 4th child I was not worried as my other kids have went through mild bugs like this many times and it cleared up on its own. The day she passed away she was acting completely normal. Just didn't seem to want to eat. She was energetic, running around playing. She was happy. We went out to eat, shopping. And then I put her to bed and she never woke up.

I was wondering if you could answer some of my questions.

1. Can BAV cause sudden death all on its own? I am confused if it were the infection or the defects that caused her death. They did not put her infection in the prognosis on her autopsy report and I am not sure why.

2. My mother died at 46 years old. She had a multitude of health problems (cushings desease) but ultimately it was her heart that was the worst. They said she had an enlarged heart and her heart was only working at 10%. She went into cardiac arrest one day while driving to work. No one ever said anything to us about her having a genetic heart defect, does it sound like she could have possibly had BAV?

3. What kind of symptoms do you experience with BAV? I get headaches quite often when active. I had problems with fainting while pregnant with all of my children. But no doctor has ever said this was abnormal.

4. Are the symptoms of an infection in your heart usually so mild? How am I to know if an infection is serious or not in my other children, if we find out they also have BAV?

I am desperate for answers. From what I am reading about BAV it isn't something you are likely to die from so I don't understand why I lost my daughter. And I don't understand why we did not know about this heart defect. My other children are having their hearts checked in 2 weeks to see if they too have this defect.

Thank you for reading.

 

[Tirone]

Dear Crystal,

I'm so sorry to hear about your loss. The bacteria that was found in the heart belongs to the normal colonization of the lower gastrointestinal tract as well as the mouth. Many of us carry E. faecalis without any problems. However, certain strains of E. faecalis are know to cause serious infections such as endocarditis and if they actually get to the heart it can be life-threatening. I can think of 2 explanations for finding E. faecalis in the heart:

1. Contamination: An autopsy is not conducted sterile like an operation. The bacteria might have been transported to the heart during the autopsy by the pathologist. One would find the bacterium but microscopically no signs of inflammation of the tissue / valves.
2. Endocarditis: Your daughter actually had endocarditis. One would additionally find damaged valves and microscopically inflammation of the tissues. Potentially other organs would have also been affected (e.g. kidneys).

Since they did not mention other signs of endocarditis, I would assume it was a contamination.

Endocarditis can sometimes only cause mild symptoms for quite a while, but a pediatric cardiologist could probably assess the clinical course best. I'm sure the pathologist could answer many of your questions and explain the findings in detail.

 

[Heart Of The Sunrise]

Dear Crystal:

So sad to hear of your loss. It is very wise to have your other children checked. You should also get checked as well as any siblings and their children.

1. Yes, I believe if the BAV is extremely stenosed it could possibly cause sudden death or if the ascending aorta aneuryism in an older patient burst. But the infection was undoubtedly a serious contributing factor.I have a nephew who at the age of two months had his BAV surgically repaired.He is now over 30 and is doing fine.

2. I believe my dad may have had it. It was not the cause of his death, but he often mentioned his enlarged heart kept him out of joining the Navy. I was completely asymptomatic I found out about it at age 56.5. Your mother very well might have had it. There is a definite genetic component to it. It hasn’t skipped a generation in my family. My dad, my nephew and me.

3. Fainting while pregnant in my opinion could indicate an issue with your heart. Shortness of breath is a common symptom as is light-headedness and dizzy spells.

4. I can’t comment on infections as I am fortunate that this has not been an issue. Others here will be able to from first hand experience. Dental health and the heart are extremely related a dental infection can cause a heart infection. I now must take antibiotics before even a routine dental exam.

5. As previously stated there are aspects of a BAV that could lead to a fatal condition. BAV is very common 1 in 200 people. When I was a child I do not believe they looked for it. I thought it was something these days that they may screen for at least at some hospitals. I am surprised that you were not aware of your daughter’s heart defect.

 

[Crystal Barricklow]

Thank you for letting me know that, I was wondering if it were something that could have happened after death or contamination. It says that it was found in her heart and in her brain. It says her liver and spleen were enlarged but kidneys were smaller than usual. Says she had congested intramyocardial vessels. Chronic tracheitis.

Of course I have no idea what any of that means and maybe that is all normal for post mortem. I plan on bringing this with me for my childrens appointment with the cardiologist. I have also made an appointment for Friday with my primary doctor to go over this but in the mean time I am having a hard time not obsessing over what happened to my daughter. I just don't understand how this could happen.

I tried to ask the coroner specific questions and he did not seem to know alot of answers. I didn't realize I could call and actually talk to the pathologist so I may do that too then.

 

[Protimenow]

I'm sorry to hear about your loss. If anything good can come of it, it's the ability to confirm that you and your kids either HAVE or DON'T HAVE BAV. At this point, today's medical knowledge is pretty good, and you should be able to deal positively with the information. If you or your kids have BAV, knowing before there are symptoms could save the life of your kids, and help to prolong yours. The loss of a loved one - especially one who is so young and innocent - is never good, but if it provides the incentive to learn more, and perhaps save siblings and mother, it sort of gives her a positive legacy, doesn't it?

(I lost a sister when she was sixteen - in a car accident. There was nothing positive to take from THAT)

 

[Duffey]

Crystal, I'm very sorry to read of your loss. Please accept my sincere condolences. I hope you will post after your visit with the cardiologist. I would ask him every question you have and don't stop questioning until you are clear about the answers. In addition, your fainting while pregnant might be significant so I would also ask to have my heart checked.

 

[Cooker]

So sorry for your loss ... my prayers are with you and your family.....

 

[Eva]

Very sorry and my heart aches for your loss. I hope you will find answers to all your questions.

Keep us posted.

 

[pellicle]

Dear Crystal
I saw your lost soon after you posted it. I could not answer any of your questions so I remained silent.

Yesterday marked one year to the day on the calendar from the day that my wife died. She was a strong, fit and happy soul we loved life and we were planning our family. We had been together only seven years.

She died from an aggressive brain tumor called a Glioblastoma Multi form. She had only a few symptoms which the doctors put down to such things as stiff neck, morning sickness (the tests showed no pregnancy however) and some dizzy spells (attributed to "low blood pressure). So within a month from that point she flew home to visit her parents and died two days after. This was when we found the tumor.

I am having a hard time not obsessing over what happened to my daughter. I just don't understand how this could happen.

At first I sought everything I could to understand "why". I wondered if it had been my fault for tow years earlier we had migrated back to Australia to do things which needed doing there. I wondered if I had unwittingly exposed her to something which triggered the cancer.

Barely a year before that I had gone for a routine checkup and an aortic aneurysm was discovered. I had surgery in Nov 2011 and they also replaced my valve. Anita had been a wonderful woman to have by my side. With our love as a basis and my desire to be fit as possible for children I set about attacking my recovery as only a biochemist turned engineer can.

I expect that I still am somehow obsessed with her passing, although I am not trying to find the causes anymore.

Sometimes **** just happens.

God gifted me with another struggle, within a month of her funeral a swelling started in my chest and it was then a struggle with a bacteria which had been left behind in the surgery. Two "debridement" surgeries later and I am still not yet in the clear.

Anita had two sisters. One older and one younger. The younger died soon after birth. Through out her life both her and her sister felt that their mother obsessed over the dead sister more than she did them. This was something which effected her and her sister in growing up. For she did not understand the reasons that their mother grieved over someone they lost when they were less than 5.

Many years ago I lost my childhood best friend from cancer. He was 20 when he died (I had just turned 21). I was on the path to recovery within a few years. His mother however always grieved and sought mediums and sought to keep contact. I have kept in touch with them always, as his father was a sort of second father to me.

The strength of her loss was really only grocked by me (to use the term from Heinlein) in this last year. We have talked about it together. She lost her husband back in 2004 so when she heard of Anita's passing she wanted to help if she could. Our conversations were long and a few tissues were needed.

I have struggled with many things in this time, one of which is the phrase people keep repeating to me. It uses the words "letting go" in different ways. I have wondered what the hell they mean. For I can never let go of the love we had or the bond we had (as hard to quantify as that is).

I have come to understand that it is perhaps like the letting go of you loved ones hand while they go to do something else. Like the mothers first day of taking their child to school. You let them go.

This is often a time of anguish for the kid and the parent.

Perhaps what makes that easier is the knowledge that you will see them again.

We are told by the many religions that there is something after death, and that we will be together again. Perhaps if I truly believed that then I could go on with the rest of my "day" knowing that I'd see her in the evening.

I struggle with that. I want to believe it, but I am perhaps too much the scientist, too much the Thomas.

My most sincere sympathy to you and your family.
I wish you peace and I wish you strength.

 

[Crystal Barricklow]

I know I will see my daughter again. I have to know this, because if I ever for a second even think I won't, then I don't think I could go on. It's the only hope I have left at this point.

I feel like this is all my fault. How did I not know she had a heart condition? And if she did indeed have an infection then why didn't I take her fever and appetite more seriously? How could I have missed all of this? I feel like I failed her, the doctor failed her, everyone did. I had her at the doctor exactly one week before she passed away and he deemed her perfect and healthy and "ahead of the game" because she was walking so well. And the she died. Sometimes the guilt is just unbearable and I don't know how to escape it. And it makes it even worse when I can't even find anyone who has been through the same thing.

 

[pellicle]

Dear Crystal

It's the only hope I have left at this point.

Part of the message I was trying to convey is that your other children need you still. Probably more now. You go on for them.

I feel like this is all my fault.

Sounds like what I just wrote about myself doesn't it. Yet it really is not.

then why didn't I take her fever and appetite more seriously?

Because as you yourself said, three other children just had fevers. Kids get sick. We can't assume everyone is on deaths door all the time because that leads to madness.

How could I have missed all of this?

Because it wasn't obvious.

because she was walking so well. And the she died.

Exactly.

**** this is like my friends talking to me just so recently....

Sometimes the guilt is just unbearable and I don't know how to escape it.

So far I have found no escape. My opinion is that you can only face it and learn to live with it. Just like all of us here live with their heart surgeries. For some it is easier than others.

And it makes it even worse when I can't even find anyone who has been through the same thing
.

No one has been through the same thing, because each of us is just that bit different.

I write a lot on my blog. It helps me to see things sometimes. Perhaps there is something of worth in my writing to help you.

http://cjeastwd.blogspot.com/search/label/grief

The most recent post is about how I have found healing in talking and sharing.

 

[pellicle]

Crystal

Its only so recent. I was a wreck for months. Give yourself time, and as Anita would say to me "don't he so hard on yourself"

Hugs and support

 

[njean]

Dear Crystal,
I just wanted to give you my deepest condolences on the loss of your baby daughter. And please don't blame yourself for what happened. As time passes, may you find Peace in your heart and comfort in knowing that someday you will be reunited with your beloved.

God Bless.

 

[chaconne]

Crystal,

We all grieve with you and the loss of your daughter. I have experienced a VERY SMALL fraction of what you are going through since my wife recently miscarried what would have been our 4th child. It doesn't matter how many kids you have, each one is as precious as if they are your only child. I receive a lot of comfort myself in knowing God personally, and Christ as my savior.

I found a case study paper that might give you an idea of what happened:

http://onlinelibrary.wiley.com/doi/10.1111/j.1556-4029.2006.00214.x/pdf

You and your family are in my thoughts and prayers.

-Steve

 

[Agian]

We're saddened by your tragedy.

 

[Crystal Barricklow]

Pellicle I bookmarked your blog, thank you for that!

Chaconne I tried to read the article but it would not allow me to read it.

And thank you everyone for your condolences. I just hope to find out exactly what happened to my little girl. And I just pray she did not suffer. She was sleeping in her own bed and room at the time and it haunts me that I was not right there with her. I pray it was sudden.

 

[chaconne]

Crystal,

It worked on my work computer so I downloaded it there and am attempting to attach it:

View attachment j.1556-4029.2006.00214.x.pdf

 

[tom in MO]

Don't blame yourself Crystal. You did what anyone else would do...what I would do. You did more than many who do not have health care or mistrust it.

It was just her time to go...As Dr. Seuss says about the death of a loved one: "Don't be sad the party is over, be happy you were invited."

 

[Rachel]

Crystal,

I too am so very sorry for your loss. I lost my brother three years ago (he was 42) - I think death is always so very difficult for those of us still here.

Hope you will find some comfort in the heartfelt condolences here on this forum.

Rachel

 

[neil]

i havnt got the words, so just wanted to say am so sad at the loss of your daughter,