In 1994, at the age of 20 Nicole gave birth to a daughter with a heart disease in which life expectancy was three years. Nine and a half years later, Nicole’s daughter Kassie lost the fight to Hypoplastic Left Ventricle Syndrome while she laid next to her in their apartment. Few people would judge Nicole if she chose to spend the years since her daughter’s passing searching alleys for narcotics or hounding doctors for emotional numbing agents — but that is the exact opposite of what Nicole has done.
Here is a bit of Nicole and Kassie’s story.
How would you describe Kassie?
Spunky and fun. She never knew she was sick and that was very important to me. When she was born we were told we would be lucky if she lived to be three. She went to school until 2 weeks before she passed away. She was developmentally delayed and had the behavior similar to a three or four year old. She did gymnastics, played t-ball and the other sort of things that “normal kids” do. The doctors told me she would be very tired and sleep a lot, but she got up at 6 am and I would have to fight her to go to bed at 9 pm. She was constantly moving, constantly getting into things. She was very, very busy.
Why didn’t you tell her she was sick?
I do not know if she could have comprehended the concept. She knew medicine was a part of her daily life. Even if she could have understood the concept I did not want her to think she was different from other people.
What was her illness?
She was born with Hypoplastic Left Heart Syndrome. It is the same illness as the first pediatric heart transplant kid.
What does Hypoplastic Left Heart Syndrome mean?
It means that the left ventricle of the heart which pumps oxygenated blood to the rest of the body is grossly underdeveloped. You and I would have 95-100% oxygen saturation. She had about 70% oxygen saturation. She had little blue fingers and little blue lips.
Did you know she was sick before she was born?
No, I did not know and I don’t know if I would have wanted to know. I had her on February 25th, 1994. The following day she was not feeding well but the first doctor I talked to said she was fine. On the way out of the hospital the nurse told us she did not look right. She wanted us to stop by the neonatal intensive care unit. When the second doctor looked at her she was put in the Intensive Cart Unit and put on IVs, ventilators, you name it.
Do they know the cause Hypoplastic Left Heart Syndrome?
No, they really don’t. This is an illness in one of every 2500 births.
Did Kassie’s illness have anything to do with you and Kassie’s father getting a divorce? (LSB*)
No, that is a whole different story in and of itself.
Were you and your ex-husband supportive of each other with Kassie’s illness? (LSB)
We had joint custody. He was a great dad. I knew when she was with him she was safe.
Do you think she ever had a sense of being different from other people?
I think she had an inkling in the last couple of weeks but prior to that she did not know at all. In the last few weeks, she started to have a lack of energy and spent a lot of time watching TV which she never did. She would say she wanted to go outside so we would go, but then she would just want to sit.
What were your options for treatment when she was born?
We were given three choices when she was born. We could either let her die in peace, get a heart transplant or go through a three stage palliative procedure.
Which treatment did you choose?
We chose the three stage palliative procedure. We thought a heart transplant could be another option should she need it later. To undergo a heart transplant you want to be as big and mature as possible.
With the three stage palliative procedure was the idea she could live longer than three years or that this could actually allow her to live into her adult years?
There are some kids with this problem that are in their 20’s. I was 20 and ½ years old when she was born and I thought, “Ok, we have can this surgery, fix this heart and take her home.” That is kind of how naïve you are. I was not a nurse then. I did not know. She was in the hospital for six weeks after her first surgery. During this time we were told three times she was not going to make it. She was meant for this earth for some reason. I believe she was here to teach us something.
What do you think she taught you? The world? (SH)
She definitely made me grow up. Before she was in my life I was so irresponsible and did not really give a shit about anybody but myself. I know that was one huge transformation for me. I was able to finish nursing school in two years while taking care of her which was a full time job in and of itself. She taught unconditional love and humor. She brought a lot of humor to situations. Now when I think of “Laugh don’t cry, I know she’d want it that.” I know Kassie would want it that way. She did not like people being sad. She would do things to make you giggle.
If you can, can you talk about the last few days before Kassie died?
Ugh. They were horrible. She was filling up with fluid and we decided that we were done preserving the inevitable. She started getting bad on Friday night and ended up dying Sunday afternoon when her lungs filled up with fluid and she drowned. Her dad and I were lying in bed with her and she said, “Don’t cry. I love you.” Those were the last words she said to us.
How would you explain your grief process? (NL)
The day she passed away in my apartment my now husband then boyfriend packed up all of my stuff and I moved into his house. I did nothing for three months. We live on the lake and it was summertime. I sat in the sun and read books. I drank a lot. I had so much time on my hands which was the hardest thing for me. I am a Registered Nurse. I understand that this is what happens. I understand that she was not long for this world, but when she passed away I did not know what to do. She took up so much of my time it was hard to morph into a new lifestyle. As far as the stages of grief I think I started going through those long before she passed away.
Do you think going through the stages of grief prior to her passing was a defense mechanism? (NL)
I think it [knowing she was ill] made it easier than it would be for a parent that lost a child in a car accident or something to that affect.
Why do you think that is?
There wasn’t any shock. For the last three years of her life when she got sick or the flu I would think, “Oh god is this going to be it?” I had a lot of anxiety.
Where would you say you are now in the grief process? (NL)
Acceptance for sure. Does it suck? Yes. There are days that are really bad. But I go to bed and the next day is better. That is just what you do. You have to say, “Today is going to be a good day.” I am blessed to be close to my younger sister and my nephew. He helps a lot. My brother and his wife are pregnant and I am looking forward to that. My husband and I have full custody of my two step children. There is a maternal void in me but I get to borrow other people’s kids which is fine by me. I feed them full of sugar and send them home.
Does losing a child make you want or not want to have another child? (CRW)
I have been waffling over that for six years. For awhile I thought, “I have to have another kid.” But, it was always one thing or another. You know, we don’t have enough money or it is this, that or the other thing. I was thinking the other day, if I really wanted to have another child, we would have found the money. I enjoy my life now. I golf with my husband. I work as much or as little as I want. I go on vacation. Our kids are 15 and 13 and they are self sufficient. For the first time since I was 19 I can do whatever I want to and I kind of like it that way. But there is also a part of me that says, “Oh god you should have another one. You are a great mom.” I love kids. I love babies. But then I think, “I am 35 years old and I am good.” We are licensed Foster Parents. We will take a Foster child when we can. Within the last two weeks, I have become at peace with my decision to not have another child.
With the decision not to have a child, is there some sort of fear in that?
The whole Catholic comes out in me – I think if God wanted me to have a sick child and have me take care of him/her then I would. I don’t know if I would make the same decisions I made with Kassie. Knowing what I know now about her heart problem if I was faced with another child that had Hypoplastic Left Heart Syndrome. I don’t know if I could abort but I think I might take the option of letting her go in peace. Looking back at a lot of our decisions, I feel some were more for us than they were for her.
How is that?
Don’t get me wrong, she had quality of life but she went through a lot of yucky things. Picking, poking, x-rays, just yucky nasty things. There were times where they could not even find a good vein for an IV.
You are very thankful for those nine and half years.
Absolutely. I would not take back one tear, one ounce of worry, one ounce of heartache. I will carry this for the rest of my life. There will always be a big part of my heart missing. But was it Spock that said, “Our pain is what makes us what we are.”
If you knew when you were pregnant Kassie would only live to be nine years old would you still have had her? (MA)
Yes. There are some people that can’t have children or lose their child at birth. I got to know her. I got to know her personality. I got to know who she was.
How do you get out of bed each day and pretend everything is OK? (JR, SH, LSB)
There are days where I pretend everything is ok. The days do get easier; I have fewer bad days now than I did before. It is never that I need to stay in bed all day. My husband has been very integral in that. Even right after she passed my husband would make me go to the store or go to work with him. He was very, very good about keeping me focused on other things other than being miserable.
Is that the key thing someone did for you or someone could do for someone in a similar situation – keep them busy? (MB, KB)
Yes. It was really hard for me to work. At the time I worked from home and I had to quit because I was not doing it very well. I took a job at a local nursing home as an RN passing out meds. Having something to take care of helped a lot. I worked as much as I could. Living on the lake I was on the boat a lot. It is amazing how many friends you have when someone passes away. People would call or stop by. That was very helpful. If anybody thinks they should not call because someone is grieving my advice is to call them. They want to be bothered or they need to bothered, I should say.
I think a lot of people do not say anything because they don’t know what to say.
At the funeral you don’t know everyone who came, but you definitely know everyone who didn’t.
I could not agree with you more. Are there times when you think you see Kassie? (LSB)
I do not think I see her. For the longest time I couldn’t drive by her school. The kids would be outside, her teacher would be outside. It was really hard for me to see. Just recently I started dreaming about her.
What do you dream about?
Everything is good and she is still here and then I wake up and it is crappy. I like the dreams when I have them but then I have to wake up.
How did your step children deal with Kassie’s passing? (LSB)
It was sad. They were a mess. My husband made them come to the funeral. They were part of the ceremony. They were so sad. The Mother’s Day after Kassie passed away was hard for me. Their mom wanted them to spend Mother’s Day with her. But my step daughter told her mom that I needed her more than she did. She is so cute and thoughtful. They are good kids. I am very lucky to have them.
Do you feel any guilt about Kassie passing away? (LSB)
No, not about her passing away. I think every parent thinks about the times where their child got in trouble. I will admit, at times I would think, “God I wish I could have a normal life where I could sleep all night and not have to give her all of these medications.” I go through some guilt for those types of things but then the intelligent mind comes through and I realize that I loved her and I was a good parent. She still needed to be punished when she did something wrong. She spent a lot of time in the time out chair.
What did people do that you thought were very thoughtless? (MB)
I got an invitation to a baby shower a few months after Kassie died.
Do you prefer people to talk about Kassie with you or would you prefer they do not bring her up? (MB, NL)
There are times I talk about her and I will be totally fine and other times where I talk about her and fall apart. People will be very apologetic. I tell them, “Don’t be sorry. This is what I have to do.” I am not going to break. I am not going to break now.
How did losing Kassie make you look at life differently? (SH)
It sounds cliché but I don’t forget who is important to me. I live every minute like it is my last. I am a huge fan of telling people how much I care about them. It taught me to make decisions like, “Hey let’s jump on a plane and go to Hawaii this weekend.” If I have the money, I will do it. I am all about having fun and living life like it was meant to be lived. I used to be the biggest worrier. About five years ago I could conjure up an anxiety attack with heart palpitations and sweating and now it takes a lot to worry me. Worrying about bills or money? It is only numbers. You can’t live your life that way. It will kill you.
What is so amazing is you have every right in the world to spend the next ten years in bed on Xanex eating ice cream and you don’t.
I am not going to say that did not happen for a small period of time, but I am pretty proud of [how I handled] it. I could have been a crack whore or a raging alcoholic or a prescription drug addict. Lord knows any doctor would have prescribed me anything I wanted. But, I decided that was not going to be me. I did take Xanex for awhile. I tried anti-depressants and it wasn’t me. I decided I was going to get through this without pills.
Are there days where you are not sad?
I am probably outwardly sad maybe once a month.
What do the sad days look like?
I will get a couple of tears in my eyes but for every tear there is a smile and a good memory and I can get through it. Usually something external triggers it, something on the news about a child, a memory or a song I hear will trigger me. There is a horrible yet beautiful song, “Streets of Heaven”. The lyrics are, “Who will hold her hand when she crosses the streets of heaven.” Just talking about it now makes me cry.
You are amazing. Are there any days you do not think of her?
Not usually. If there is, it is because I am doing something I did not do when I was with her. My husband and I play golf a lot and when I do that I do not think of her. I think about her at least a couple of times a day every day.
How would you describe the pain of losing a child?
There is always a void that nothing is going to make better. Immediately [after Kassie’s passing] I wanted to have another baby but I realized a baby is not going to fix me. Another baby is not going to replace Kassie.
It sounds like you have a very supportive family and friends network. Is there always a sense of loneliness that nobody knows? (LSB)
Yes. I had a regression in September or October of 2008 and that is when I joined support groups online. There everyone understood exactly what I was going through. Venting to people in support groups significantly helped me. I highly recommend them to anybody.
What do you mean by regression? (NL)
I was miserable. It felt as if she had just passed away. Perhaps I was finishing another stage in the grieving process and did not realize it. I was just a wreck and for me to be a wreck for more than a half hour is kind of weird. I sat at my computer and told Kassie’s story to other moms and dads. I bawled my head off and people replied as if I had known them forever. I must have received 60 replies from all over the world. It made me feel like I was not alone, like people understood. Then I was ok.
Is there anything else you would like to say? (MB, KB)
If someone knows someone that has lost someone do not treat them like they are going to break. We are not going to break. We might break down, but that is what your friends are supposed to be there for. I think the worst thing you can do is hide or not acknowledge that something has happened.
*Indicates the initials of the person that wanted this question asked.