My Baby Sister, Our Family's Loss

November 4, 2010

I was 6 years old when my little sister Kristina was born. (We called her Sissy since the day she was born!) She was a beautiful, chubby cheeked, happy baby. (I'll apologize for the quality of these pics now lol... remember most of these were taken in the late 70's and early 80's!)

{Holy cow my Mom was skinny!} 

Having been the baby for 6 years you can imagine that I was none too happy about her arrival. I remember telling my Mom one day that I was going to run away because nobody loved me anymore! Yes...I was THAT kid! Haha!

{haha how cute are we? I'm the one on the left}  

 My Mom packed me a lunch and helped me to pack up a small suitcase, she walked me to the door and told me that she loved me and that she'd miss me and then told me goodbye. I sat out on the porch for what seemed like hours...but was probably no longer than 30 minutes! I couldn't believe that she helped me run away. Finally I got tired and went back inside to watch cartoons. After a while I decided that I liked her enought that we could keep her lol.

When Sissy was two and a half (I was 8) I remember my Mom having to rush her to the hospital. I don't remember what all was going on with her other than the fact her head was hurting her so bad that all she did was scream and that she was having trouble breathing. She was in the hospital for a couple of weeks...they couldn't figure out what was wrong with her, all they knew was that her lungs were hemorrhaging and she was drowning in her own blood (for the lack of a better way to explain it.)

Her Dad (my step dad) was stationed in Korea at the time and was immediately flown home...they weren't sure if she was going to survive this or not. I can't remember how long it took them before they finally had a definitive diagnosis but I know that by the time they did figure out what it was she'd had several "episodes" and had been hospitalized several times. 

{poor thing, the steroids did that to her cheeks!} 

She had a rare disease called Idiopathic pulmonary hemosiderosis (you can read about it here.)  This disease is very rare and happens in about one in a million children. When she was diagnosed there were five known cases in the United States and none of those had lived over the age of 17. We were all devastated. And scared.

{you know it's the 70's when your child is wearing more pastel colors than the Easter bunny is!}

Basically she had recurrent pulmonary hemorrhages and her lungs would fill up with blood. Her body would "remove" most of the blood from her lungs but an abundance of iron was left behind, which caused damage to her lungs. She was also severly anemic. They didn't know what caused it and there was no cure.

She was a guinea pig, none of the doctors knew what to do with her. Momma always tried to bring her to the same hospital, because if she brought her to one that she hadn't been to before they would poke and prod at her, it was awful. They really had no idea how to handle her case.

She was on Prednisone (a steroid) her entire life (starting at 2 1/2), they stunted her growth and puffed her cheeks up so much that they looked like if you touched them they'd bust. She was about 4'0" (if that) when she passed away.

{no matter how sick she was, she always had that smile on her face}  
(Yes! I know! There are no words for what I'm wearing, or for that haircut lol!) 

They figured out when she was 5 or 6 that milk and milk based products were one of the main things that would cause her lungs to start hemorrhaging. (This is a condition called Heiner syndrome) Once they cut anything and everything with milk in it out of her diet it seemed to lessen the occurrences of hemorrhaging. Even with that she was still hospitalized at least 5 or 6 times a year. I couldn't begin to tell you how many times she was hospitalized in her lifetime, but I know it was a lot.

{This was taken less than a year before she passed away}

I can't imagine what it must have been like for her. Knowing that she was terminally ill. Going through all she had to go through on a daily basis. Having to miss out on all the things that "normal" kids got to do. She couldn't go outside and ride a bike (for very long), she couldn't run, she couldn't eat ice cream, eventually she couldn't even go to school. She had to give up so much because of this damn disease.

 {if I could have granted her one wish, it would have been that she didn't have to spend so much of her time like this}

She had a slumber party for her 13th birthday and sometime in the the middle of the night she woke my Mom up to tell her that she needed to go to the hospital, "it" was happening again. She wasn't feeling well and was having trouble breathing. 

{this was about four months before she passed away, it's the last professional picture that was taken of her} 

By the next morning she was on life support and had to be resuscitated twice. The doctors sat my family down in this little room and gave us two choices, we could either pull the plug or we could send her to Children's Hospital in New Orleans where there was a Dr who specialized in the disease she had. (On a side note, my Mom was never told of a specialist anywhere...let alone right there in New Orleans.)

We decided to send her to New Orleans. But by the time they got her there she was in multiple organ failure. She lived for 6 weeks before her little body couldn't take it anymore.

As a family we all decided that we needed to tell her that it was ok for her to let go, that she'd fought hard and long enough. It was time for her to finally rest.

When the Dr came out to tell us that she had passed away my Mom didn't shed a tear, she looked at the doctor and told him (in the calmest voice that I've ever heard) that she wanted to thank him for everything he did to try to save her. 

 {look at those freckles} 

I was hysterical. But Momma never cried.... until we drove away from the hospital and the only thing she said was "my baby!" And then this scream came out of's one of the most heart wrenching things I've ever heard! I could tell that it came from a dark place deep inside her heart. It seemed like she cried for two weeks straight. Momma was never the same after she died, a part of her died that day too! 

{it's hard for me to look at her pics, when I see those freckles I just want to cry} 

When we got back to our house (3 hours from New Orleans) Sissy's three best friends were at our house and they didn't leave my Mom's side...not once for over a month. Those three girls were so good to Momma, I really don't know how she would have survived without them. They gave her a sense of peace. I'll never forget how there were there for her, how they comforted her in those days after we lost Sissy. They sat with her. They held her hands. They wiped her tears. They held her.

{Sissy and one of her bff's Tisha after we put make up on them}

My Mom and Sissy's Dad divorced when Sissy was 5. While she was in the hospital Momma called him to tell him how sick she was, to tell him that he needed to come see her before it was too late. He didn't believe my Mom. He "had" to speak to two of her doctors and a social worker at the hospital before he would believe that it was that bad.

When she passed away Momma called him again to tell him. He sent her a check for half of the funeral cost and sent flowers to the funeral home. He didn't even show up. I'll never understand how he could do that. I mean, he lived in California near his parents. But could her own Father (and her Grandparents for that matter) not come to his daughters funeral??

Her's was the saddest funeral that I've ever been to, not just because she was my sister but because the entire Jr high school was there. It was amazing because Sissy hadn't been to school in two years, walking up and down the stairs and walking from class to class was too much on her lungs.  Teachers from the school volunteered to come to our house and home school her. So to see all these kids show up for her funeral even though most of them hadn't seen her in a year or two, it was touching.

The preacher was a close friend of my Mom's and he asked everyone there if they would write down one thing that they loved about Sissy. During the service, he would pull a slip of paper out of the bowl and read it. It was so comforting to hear what everyone had to say. He gave all of them to my Mom at the end of the funeral.

About 6 months after she passed away on Arbor day, the school dedicated a tree in front of the new school they were building to Sissy and invited my family to the dedication ceremony. Her friends and classmates got to tell us about her, there wasn't a dry eye in the house. One by one these poor kids got up and spoke about her, half of them would have to stop because they were crying so hard. It was heart wrenching and touching at the same time.

After the ceremony they had a balloon launch in her honor. The newspaper wrote up a really touching article about it with a picture of my family and all of her classmates and friends releasing the balloons. I couldn't find it to include it with this entry. 

{you can tell in this pic that this was during one of her "healthy" periods}

Years (probably 10 years or more) later my Mom was watching a program on TLC and they were talking about this cluster of 10 babies in Cincinnati that were sick and they couldn't figure out what was wrong with them. In one of the instances there was a set of infant was sick, the other wasn't.

When they said the name of the disease that these kids had, my Mom almost fell out of her chair! Yup! They all had Idiopathic Pulmonary Hemociderosis. (Remember, when she was diagnosed there were only 5 known cases in the U.S.)

Every one of these kids lived in a house that had black spore mold in it. In the twins case, one twins crib was by the ac vent and the other twins crib was clear across the room from it. The one who's crib was closest to the ac vent was the one who was sick. The mold spores were flowing through the air coming out of the vents.

The reason that the infants/babies got sick and the older kids in the homes (like my two older sisters and I) didn't was because the babies lungs were weaker and more susceptible to the mold. The older kids lungs were stronger, more developed.

We lived in TN when Sissy was born and lived in a house with a basement which was full of mold. But back in 1975 no one knew the dangers of mold. (I totally freak the minute I see mold on something now!)

{what a ham}

In short, it is thought that Stachybotrys chartarum (black spore mold)  is what caused these kids to get this awful disease. Officially, there's still no "known" cause. 

Sissy was a sweet but bratty kid. As you can imagine my Mom gave her everything she ever asked for. What else could she do knowing that her daughter was terminally ill? She had 13 Cabbage Patch Dolls when she died, we buried her with her very first one. Then we gave her three best friends each one too.  Momma also gave one to each of her Grandkids.

It's funny, my Grandfather's name was Russell Hugo. Sissy had a CP doll named "Rusty Hugo." When my son was born 10 months later I named him after my G'pa. Momma gave Rusty Hugo to Rusty, and he still has it. 

{if my Mom were still alive I'd ask her what in the hell was going on with my hair when I was little lol} 

After hurricanes Katrina and Rita I found out that our local TV station was going to be doing a story about mold in all of the homes because of the flooding. I emailed the reporter and told her about Sissy in the hopes that she wouldn't just talk about the insurance companies dragging their feet and yada yada yada, I wanted to make sure that she talked about the toxic effects of mold!

The reporter emailed me back and asked me if I would be willing to appear in the report and talk about Sissy's life, and death. I can't begin to tell you how much I didn't want to do it. I am so not the public speaking kind of person but I figured if by doing the interview it could help save one life...I had to do it. That's why I decided to write a blog entry about her life, and her death. (Well, that and because I miss her.) Maybe it can help save one life.

There's still no (known) cure for this awful disease. Though when I was looking it up to do that interview I did read about a couple of instances where they "caught" the disease early enough that they gave the babies (there were two of them that I read about if I'm not mistaken!) steroids and in one of the cases the baby never had another "episode" of hemorrhaging again! The other baby went a couple of years before hemorrhaging again. There were also a couple of adults who'd had double lung transplants and seemed to be doing fine.

The entire 6 weeks that Sissy was in the hospital in New Orleans my family and I stayed at the Ronald McDonald house. (Except my Mom, she never left the hospital.) If not for that amazing organization we wouldn't have been able to spend all the time with our Sister that we did. We were able to go to the hospital every morning and stay there until the late afternoon. Every day. She was in a drug induced coma, but I know that she knew we were there.

{photo from Google images}

Can you imagine what an amazing gift that was to us? I donate to them every chance I get. Please...if you can afford to make a donation to a worthy cause, please make a donation to the Ronald McDonald house. Or if you live near one you can donate your time by volunteering. You can go here to find out more information.

Please donate if you can!!!

Like I said, even if you can't donate money, if you live near a Ronald McDonald House...volunteer! You can't imagine how much peace that house brought to our family.

Thanks for listening and for allowing me to pay tribute to my little Sister. She's been gone for 22 years now and I still miss her just as much as I did the day we lost her! Her tombstone says "You are the sunshine of our lives" and that's exactly what she'll always be!!

{Sissy, you are the sunshine of our lives. I love you}


Gen said...

AMAZING. amazing. your sissy left a legacy that very few ever will understand...and i'm glad to know she's dancing around heaven with my baby girl.

ShirleyC said...

What a heart wretching story! I just can't even imagine losing a child and how it would effect you, but I can certainly see why life would never be the same again.
Maybe by spreading the information about this disease it will help others.
God bless and many prayers for you and your family.

Louisiana Belle said...

So sorry for your loss and that painful time in your life. I really wish I hadn't read this while eating lunch - I was so choked up I could hardly swallow!

This is a great educational post and I'm sure it will do some good. I lost my little sister when I was 5 and she was 3 in a horrible car accident in 1967. If seat belts had been mandatory, how different all our lives would have been! Education is so important. You have done a wonderful thing here. :) God bless.

Scraps said...

I'm so sorry that your family had to go through all of that. Just tragic.

I lost my baby sister young, too. She was born (when I was 5, old enough to remember a lot of it, vividly) with biliary atresia, a problem with the bile ducts and her liver, and she spent her 5 months in and out of the hospital--mostly in. She died during yet another surgery, just never came out of the anesthesia. I remember the day Mom came home without her and the absolute tantrum I threw, I was so mad my sister wasn't coming home. A couple of years after she died they pretty much perfected the liver transplants to treat it (it only takes a small portion of an adult liver and it will then grow with the child), it just wasn't soon enough for her.

I think I'll light a candle for each of our sisters when I get home tonight.


Martha Ruth said...

That was a beautiful tribute to your Sissy. The loss of a child is like no other loss you can experience. I understand how your mom felt when she lost Sissy and I know my daughter understands how you felt/feel. You don't ever get over it... but you do get through it eventually with the support of family and friends.

We stayed at Ronald McDonald when our precious angel was fighting for her life and we donate as much as we can also. What a wonderful organization and I don't think most people realize just how much they do for families. It isn't just a place to stay, it's a support system, a spiritual haven and a place where people understand what you're going through. Plus so much more...

Blessings to you and your family,


MiMi said...

This post was wonderful. It was sad, but so I will remember this disease so that anyone around here ever starts to have that problem I will know what it is, hopefully. We have tons of mold in our area and all kinds of problems with it. :(
Hugs for you today.

Melanie said...

Such a sad post, but what a lovely tribute to your Sister. Thanks for sharing her story. I can't imagine how hard all of that was for her and all of your family.

Dee Stephens said...

WOW! Amazing post D! Mold is VERY dangerous! Freaks me out as well. Ronald McDonald Houses are great places.
Charlotte just got its first one a month ago!

Aunt Crazy said...

WOW is all I can think right now. The courage it took for you to pour your heart out and to help with the cause and talk with the reporter, kudos to you even though I know you wouldn't want them. I truly can not even imagine what it would be like to lose a child or a sibling and I'm selfish enough to admit I hope I don't have to. I'm sorry you did though (HUGS)

Shawn Becker said...

A beautiful tribute to an adorable sister! A loss of a child is something a family never gets over they just learn to continue on with their lives. I hope writing this post was therapeutic for you. I am sending prayers and ((((hugs)))) your way.

singedwingangel said...

My old house before this one was filled with mold. The man who set it up had not done it right and water was able to get inside. By the time we learned of it there was no insulation left in the walls nothing but mold. I was furious.
This post made me so sad hun... sending you hugs today for your bravery in telling about it and your loss

Shell said...

Wow, I have no words. What a tribute to your sissy. *Hugs*

Keeper of the Skies Wife said...

That was a beautiful tribute!!! I didn't expect to cry this morning when I arrived on your blog. Thank you for sharing this with us.

Honeybell said...

Just lovely. I was so shocked to see your comment this week on my post about my friend Pam. I've never heard a personal story of another person suffering from this horrible disease. Thank you for sharing.

adrienzgirl said...

I bawled reading this. BAWLED! What a lovely post for your Sissy! LOVE AND HUGS to you today Dee!

Marguerite said...

Excellent post and lovely tribite to your dear little sister. I'm so sorry for your loss. I lost my brother in 96', so I understand how devastating it is to loose a sibling. Thanks for sharing your feelings and for this information about mold and it's effects on infants. Hugs, cher!

Fragrant Liar said...

Wow, that's really an incredibly sad story that everyone should pay attention to. I'm sure most people don't have a clue about this disease nor that it (I assume) is preventable.

Your sister was a precious and sweet little thing, and my heart goes out to you for having lost your little sister. I lost mine. Only two years ago, and she was an adult, but it hurts just the same.

Thanks so much for sharing your story.

AMY said...

So sad and heartbreaking! Thank you for sharing your story and spreading the info you've learned about molds.
Its almost 1am and I'm laying here reading your blog, this story sucked me in. My heart goes out to you.
I'm a new blog follower.
Amy's Life @

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