Not fitting in

Remember the first day of school? I know, wayyyy back for some of us. Ok, maybe just me. Remember not knowing anybody? Remember finding someone who you thought you had things in common with just to find out that they were so very different than you? Remember feeling like you didn't know if you'd ever fit in?

That's where I am. As some of you loyal readers know, this journal has moved around a bit. It has evolved and downright changed sometimes. It went from caringbridge to another blogger spot then merged with my family blog. It just never felt 100% right.

Then I started writing my book about Alex's life. The title of the book started out "Broken dreams" but in writing I realized that it wasn't about broken dreams at all, because when something breaks it's no longer useful, it's lost it's purpose. Alex's life and death have always been very useful. Him being born broken wasn't the end of the purpose of his life and his death wasn't either. It was a journey.....

So, the title of the book became "A Walk through the valley" one night. We did walk through the valley of the shadow of death in a very real way. But that walk THROUGH means we came out the other side, or at least that we have the ability to do so someday.

So here we are now in a new space. A space that feels very right with no agendas and no plans. Just living, dealing, and becoming the new me at my own pace. No censoring my feelings in fear of what people might think.

I'm Kat, my son is in heaven. I miss him terribly and some days I'm not sure how I got here or how I'll move on. Take me as I am.

The Lord is my Shepherd; I shall not want.He maketh me to lie down in green pastures:He leadeth me beside the still waters.He restoreth my soul:He leadeth me in the paths of righteousness for His name' sake.

Yea, though I walk through the valley of the shadow of death,I will fear no evil: For thou art with me;Thy rod and thy staff, they comfort me.Thou preparest a table before me in the presence of mine enemies;Thou annointest my head with oil; My cup runneth over.

Surely goodness and mercy shall follow me all the days of my life,and I will dwell in the House of the Lord forever ~ The 23rd Psalm

Bitter old hag

As I've been sitting here for the past little bit reading some caringbridge sites of kiddos we either knew when we were in the joint, or who we have come to "know" through those we knew I have been reflecting and thinking about me, my positions on things...

I notice I've been bitter lately. Lately being the past couple years or so. Alex would be coming up on turning TWO now you know. TWO! It astonishes me that 2 whole years have nearly gone by... anyway back to my point.

I've been bitter, I've been angry, I've been downright pissed off. But you know what? Who wouldn't be? I have to talk to people, see people, and hear about people who take what they have for granted. They go about their day. They go to work and spend 2 hours a day with their families and somehow that is ok. They just don't realize how quickly EVERYTHING can be gone.

I'm simply sick and tired of people who take it all for granted. Every single morning I wake up and nearly cry because my kids are still here for one more day. Every night I go to bed begging God to give me another day. I have learned the hard way that people don't stay here forever. So many people don't think they take it for granted but they DO. You can see it in their day to day lives.

I guess I get so angry about certain issues because I know what it feels like to just wish you had that 1 more day. I wish I didn't need to sleep during those 7 weeks, I wish I didnt' leave him for a second to eat, use the bathroom, whatever. But I did. Those things I really did HAVE to do. People walk away from their kids every day for things they don't HAVE to do and I can't fathom making that choice.

People worry about such stupid shit. They worry about sports games and shopping and if their dry cleaning will be ready by 5. Why? What the hell does any of that stuff matter? It consumes people's lives and I can't figure it out. WHO THE HELL CARES?! Is your home standing? Is your heat working? Is your family safe and healthy? Then get down on your damn knees and thank the lord above.

It's just really frustrating. Yep I'm angry and bitter and all that other stuff. But I'm grateful and happy too. I don't take one minute for granted anymore. It's been said that I am a changed person since Alex died. Well of course I am! I'm a whole lot different than I use to be. I know I've become a lot less tolerant and likeable. My mission in life isn't to make everyone else happy, i'm sorry to say. It's to make my life and that of my family the most rewarding it can be.

I'm still learning. I'm learning who I was, I'm learning who I am, and I'm learning who I want to be. Forgive me if I confuse or anger you in that process but it's a ride you can't join me on. It's a ride that won't be over for a long time and maybe I'll never figure things out. You have the choice to ride it beside me or to stray away. I don't have any choice in the matter but you do, use it. Don't pretend, don't patronize, and don't make my grieving/learning/growing process about you, it's not. It's about me and it's a very difficult path to follow because there's never a straight line........ the path zig zags, loops, and sometimes just simply turns around and goes back where it came from. All I know is that for right now I am sorting things out and I am keeping those close to me as close as I can.

Life aint always beautiful

Isn't that the truth. 2 children who's websites I frequent died yesterday. They both had a brain tumor called a diffuse pontine glioma. It is inoperable and treatment is aimed at slowing it's growth. The average life expectancy is 6-12 months.

This morning Hailey and I were talking about hard subjects, as we frequently do. We talked about Alex and how he fought so hard to be here and how people aren't always perfect but sometimes the least perfect have the most to give. I wonder sometimes what the greater plan is for us all. The why's are so difficult to deal with sometimes. I don't think I will ever understand why Alex died. I don't know that any parent who loses a child ever gets that moment of clarity.

I think about all the children who are simply denied the chance. The babies who are lost to "medical termination" upon their parents finding out they have down syndrome, or some other abnormality that makes them "less than perfect" in the eyes of the world. It makes me angry. I wish I had my disabled child, I WISH I could push him in a wheelchair, I wish I could hug him, kiss him, and sing him to sleep.

I am comforted in the fact that we did everything we could. He was in an amazing hospital and every medical opportunity was available to him. We could have "let him go" as some would have. HE chose when it was time to go, I'm grateful for that.

Every one of us is less than perfect in some way. If we ought to abort a baby because it's not "normal", where is the line? Aborting one who has a cataract? who will need a brace for scoliosis? And when is the line drawn? If they are taken before birth it's ok, but when will we start moving on to sacrificing 2 year olds who contract a disease? I just don't understand how we think we have the right to decide who lives or dies. It doesn't make sense.

I was once reminded that God gives us free will, but he also gave us a brain. But did he intend us to use that brain to make decisions best left to him? Where is THAT line? You have to draw it somewhere.......... so where?

I struggle with these questions. A few days before Alex died I finally broke down completely and relinquished control to the lord. Right there in front of the dormatories of the University, in front of the busy hospital. I'm sure I looked like a lunatic but the weeks of what felt like running through water finally caught up with me and I had nothing left to give, I had no fight left in me. I told God he wins, I give him control. It was then that the put my son out of his misery. I never gave up on Alex but I gave up my selfish fight for him with God.

Some people don't understand the decisions C and I make regarding our family. It's difficult sometimes because it would be senseless for us to learn the lesson we did, to give up control, and then try to take it back now. But what does God intend for us to have control of, and what does he solely take control over? I just don't know.

To some people it's all so simple. It's just not for us. I don't think things will ever be simple again. Things use to be so simple even though we didn't realize it, now the seemingly smallest things just aren't anymore.

It's exhausting sometimes. This post probably makes no sense either hehe, it's one of those that I'm just typing as I'm thinking so I apologize for that. It's one of those more for me than you kinda posts.

When reality isn't

In a wierd way, i've spent the past almost 18 months in a sort of denial. To ask me I would have vehemently swore that I was not in denial, I was coping the best way I could. But I was/am.

I don't think i've ever taken the time to totally process. When Alex was born and got sick, those weeks were such a constant roller coaster. There was never any downtime to think. I never had the chance to really say "Ok, my child was born gravely ill, this is our reality"

After he died, we threw ourselves into things, we got pregnant with Nathan, again, never taking the time to process. To really accept that our child died.

Now that things are leveling out. I find myself realizing that my child was born, he was critically ill, and he died. HE DIED! I read stories of other kids who have died and I feel such a deep sympathy for thier families, it's like I don't realize sometimes that I am one of them.

I remember the Monday before Alex died, the day when the inate "knowing" took over and without being told, I knew he was going to die. I remember making the kids lunch and crying that whole day. Hailey asked what was wrong and I just blurted out "I think Alex is going to die"..... I felt SO bad about saying that, watching the tears well up in her eyes. Yes he had taken a turn for the worse but there had never been a time when anyone said to me "you know, Alex probably isn't going to pull through". I started to question myself. Why would I say that to her?! A child!

That afternoon at the hospital I talked to the child-family life specialist and I didn't tell him that I had told Hailey that, but he said something to me that made a ton of sense. He told me that the worst thing I could do is hide from my kids. They KNOW when something is going on without being told and if you don't say anything, they get scared and upset. If you say it, then at least they know what's going on. You see, kids have a great way of making other people's problems about them. Not that they are selfish, they just always think that if an adult is upset it's somehow thier fault. So by saying what I said, Hailey knew that I was upset about Alex, and it wasn't her fault.

This grieving process. It's hard to get a handle on. There is no right or wrong way to do it and that makes it extremely difficult to know if the things I do, my coping mechanisms, are they normal or abnormal? Am I grieving in a "healthy" way, or not?

I suppose I'm greiving in my way. And that makes it the right way. I just wish someone would come along and tell me how I can put this behind me....how I can understand.

He's been on my mind a lot more than usual lately. It struck me odd the other day when I saw a kid who had a feeding tube and the mom was tending to his needs. I got sad and thought how I wish I had the opportunity. Who WISHES for a sick child? It's so strange, like I was robbed of being mom to an Alex who would have been normal and healthy, but then I was robbed of an Alex who was sick and needed such indepth care. I had prepared myself for spending the rest of my life tending to his needs with medications, doctor visits, surgeries, procedures. And I'm grieving THAT too. I guess anything you prepare for and dont' get is a loss.....

A new beginning

I stopped by to check the guestbook entries and saw Trista's entry and cried. Some days I yearn for that moment of healing........ that moment that the hole in my own heart closes just a little and then I realize that it closes a little every day. I don't have a "superman" scar that people can see, but some days the scars are covering my entire being.

I always knew that our experience was for a reason, I think that I thought that one day someone would just knock on my door and tell me what I was suppose to do with it. God and I have many conversations about that. I have trouble reading between the lines and seeing the rainbow for the clouds sometimes.

Every day that I have lived since the day Alexander was born has been a new day to do something with my life. In the past year and a half I have had to rebuild myself and I still sometimes wonder if I ever will be a complete person again. I have gained confidence, I have gained tremendous knowledge and compassion, yet I have lost such a part of me that I can't get back. I am just now realizing that maybe I don't need it back. Maybe Alex's illness and death was my rebirth. Maybe I got the opportunity to start new in life, that's a very liberating idea.

I'm different now. At first I resented the stares, the saddened looks as people glanced my way. Now in a way I cherish that. When Alex died all expectations that I put on myself of what I thought I needed to be melted away and I was given a chance to become anything I wanted to be.

I think I have come a long way in that venture. I think I'm a good person now. I didn't always feel that way. I can look at myself in the mirror and although I've aged physically this past year, I like what I see. I see a woman who has finally become something. I have finally gotten my career where I want it to be, I have finally become the mother I wanted to be.

I don't think I've dealt with it all in ways that were expected. I think you have a choice, you can lay down and die or you can realize that quite honestly the death of your child is the worst that life can do to you..... I've survived it and that means I have the strength to do anything. I refuse to lay down and let my spirit die.......

Every mother's nightmare

Every mother pushes the thought from her mind. The thought that something could happen to her child. It wakes us from our sleep, we think we would fail to survive it.

Some of us have for whatever reason have to live it. Somehow we do survive it but how much of our soul is still intact isn't always certain.

It started with the vasectomy, kind of strange isn't it? Then the reversal. Then by the grace of God the positive pregnancy test. An uneventful pregnancy, perfect in every aspect until at 36 weeks my water broke.


He was born in January 2006 at 2:32am. A petite 4 lbs 14 oz. The next 16 hours were pure exhausted bliss. Until he stopped breathing...

That night we heard the dreaded words that would change our lives. Heart defect. We traveled to one hospital to stabalize him, then another to fix him.

We lived in a Ronald Mcdonald house for over 6 weeks.
Our lives turned on it's nose. Normal became a thing of the past. Our lives were dictated by every breath of a ventilator, every blood test, every ultrasound, CT scan. They say it's a roller coaster. It is. Imagine that feeling as you are going up the track.... the anticipation. Then imagine going over the hill to the first big drop. The track could well derail and hit the ground.... or it could be fine and climb another hill only to drop again. There is no certainty. So many days and nights I would sit in his room, 3 or 4 chairs aligned in a row with doctors and me just sitting there with baited breath waiting for Alex to show us all what to do next.
Alex showed us strength far beyond anyone's comprehention. So many times he pulled through from deaths door. He taught us to live in the moment, because you never know what the next may bring.

Alex showed us patience. He endured so much to stay with us until the moment we were strong enough to live without him.

The day he died changed my already changed world. My children now knew that children die. My husband and I now completely understood the uncertainty and precariousness of life. We learned to take each day as the gift that it is and never let one day go by where you are not happy with the way you lived it. It might be your last.
The day we put his tiny body in the ground made me realize that in an instant, life is over. It's that quick. You live, you die, you are put in the ground, and people walk away. All that really matters is what you do between the day you are born and the day you die. How many lives you touch, how many lives you make better in some tiny way.


So, from that day forward, I have tried and will continue to try to make each day count. I will try to live without regret. I will try to teach others the lessons that my son taught me. I learned more in 6 weeks than I will teach in a lifetime.

Nothing makes sense

Sometimes I wonder if I'm just not in a huge state of denial.... I don't visit the cemetary and I'm starting to feel insanely guilty for that. Maybe it's because although I think I've accepted it, I really haven't. In so many aspects I'm still living Alex's life........ maybe I have yet to realize his death?

Lately the whole thing has just seemed kind of surreal. Like there's no possibly way all this has happened. I feel like it was this crazy dream, one of those dreams that haunts you long after you wake up even though you know it was only a dream.

Maybe none of this makes any sense. I don't even thing anyone reads this journal anymore so I'm thinking about discontinuing it. Why should they read it? The adventure is over. The excitement is over.......... all that is left is............ I'm not sure what.

I don't understand

It's not often something can send me back to that place. The sobbing mess on the floor place. It happened this morning.

The little girl, Ashley that I talked about in my last entry has gone to heaven. It hit me hard this morning and I spent a bit ranting at God and everybody else. The WHY factor you know. I hope that someday when I get to heaven I will have the priveledge of understanding because I just don't. I try to see the silver lining but it's hard when these kids fight and fight and fight so hard only to die anyway. It doesn't make any sense! Craig said something about lessons to be learned, and I beleive that. But who's lessons are they to learn? The parents? well how fair is it to put a child through that for someone else's education? Is it the child that is learning? Why does it have to be learned THAT way.

It will never make sense to me, it's probably not suppose to but I'm a question and answer kinda gal, and I want answers!

Why do kids have to die?

I don't really know what to write in here anymore. My thoughts and feelings seem clouded lately. Not a day goes by where I don't think of Alex and I don't expect that will ever change, nor do I want it to.

So many people take for granted. Take for granted that they will give birth to a healthy baby and take that baby home, that they will watch that child grow and learn. So many people just expect that thier child will be here tomorrow. Of course they do, they haven't seen what i've seen.

I ask you all to pray tonight. For a sweet little girl named Tiahna that is in the U of MN hospital fighting for her life from Leukemia. Such a beautiful baby. Her parents received some disheartening news today, the kind of news that really sets you back in the knowledge that your child might not live through this test. Not that I'm sure they've ever forgotten it, but sometimes you let yourself drift to the other outcome and by the grace of God you can keep yourself there in that happy place of "my child will come home". And then things change and you have to look in the face the possibility that kids DO die. They die suddenly, they die after long illnesses, they die because of mistakes, accidents, murder. Children die. Treatments sometimes can't work and we fight with God for our children until the time comes to realize that these children aren't ours to keep and it's a fight we can't win. This is a hard reality to swallow for anyone, but when you are the parent of a child who might die, the feeling is undescribable.

I'm probably not making much sense tonight and that's ok. My heart is heavy tonight. I feel like since Alex died death follows me. Although I may not always personally know the children or thier families, children dying is everywhere I turn. Sometimes I wonder if it's me lol maybe i'm bad luck or something. I wonder why God lead me to this place I stand right now. What purpose does it serve to keep death in my sights? What do you want me to do with this wisdom and knowledge that you've given me through the life and death of my dear sweet son? I pray for direction.

If you want to hear God laugh....tell him your plans

I would like to start off by thanking everyone who has shown us that there are good people in the world by thier kind words and generosity contributing to the Bubba's Bears 4 CHD project. I never in a million years expected the kind of response we have gotten.

I look back and think of all the events in our lives that have led me to this point where I am now. All of the times things just didn't work out the way we planned were just preparing us for the road that God meant for us to travel.

It's funny because a couple of years ago I heard in a country song the line 'if you want to hear god laugh, tell him your plans' and I thought that was sooo true. I never realized until now just how true it actually is.

We spend so much of our time trying to plan and control things and some of us are hard to teach I suppose. Life is so much less stressfull when you just let Jesus take the wheel and buckle up and enjoy the ride.

I'm not ok!

I thought I had done the right thing by going back, but now I am left unsure. These past 2 days have seemed more challenging than the one's before. Is it because going back there really showed me that he's gone? Maybe there was some comfort in pretending he was still there.

I miss him. I barely got to know him but it's unbearable how much I miss him. He would be 3 months old as of next friday and I was brutally reminded of that by a pamphlet I got in the mail today 'your 3 month old'. It left me sobbing on my bed tearing everything out of the box.

It's been said that God only gives us more than we can handle. Did he screw up this time? Maybe God isn't omnipotent like we want to beleive and he made a mistake. Can I really deal with this? Can Craig? Can we ever become real people again or will we live the rest of our lives just this shell of who we were meant to be?

I try not to be angry. I try to just keep it all together and carry on with life like Alex would have wanted me to. He fought every single day for his life and woulnd't want us to just let ours slip away from us. But I don't know if I can. I don't know if I will ever be able to get through a day without my heart hurting so much.

It's just not fair. Babies aren't suppose to die. He was suppose to bury ME in the ground.

I have trouble beleiving sometimes that a good god would let people hurt this way. The way Alex did and the way I am now. Someone said to me that sometimes God chooses to heal, and sometimes he chooses to comfort those of us left behind. We'll I'm telling ya, I'm not feeling any comfort. I feel like God abandoned us just when we were starting to finally get it. It doesn't make any sense! I sat out on the deck the other night crying in the rain, telling God that if he's so almighty, to get his butt down here and tell me why he took my son, at least I deserve that......... Did I get any answers? no and beleive me i've listened. I've listened so intently for any speck of anything that would provide me some peace and it's not coming.

Yes, my faith is waivering. Just when I had really found it. Because God took my child from me and left me alone, in my own misery to deal with it.

People say stupid things, 'oh he's better off in heaven'.... Well if that's the case, why did God send him here at all? To feel pain? Are there no better ways to teach a soul than to destroy it? Maybe he didnt' destroy Alex's, but he did mine. I've always beleived that God molds us, to fight in his army when the time comes....... how can I fight if I don't have anything left to give? Alex may well be 'better off' in heaven, but he would have had a damn good life here too. He will spend eternity in heaven, life is in the blink of an eye....... why not let him live some of it?

The world is just going on around me and I'm struggling to keep up. Am I depressed? another silly question people ask.... I'm depressed, I'm scared, I'm unsure who I even am or what I beleive. The world keeps on turning and mine is just standing still....

I don't understand!

For some reason today has been a very hard day. I am finding it very difficult to find my 'happy place'. Easter is coming, not only is it the first 'real' holiday we planned to spend with our sweet baby boy, but it is also our first goal 'home date' in the hospital, then when we realized it probably wouldn't happen, we were rooting for Mothers day. So Easter is going to suck this year because of that and to top it off it falls on the 16th and marks the 1 month anniversary of losing Alex. I just don't want to do anything anymore.

People try to get me out of the house. My mom wants us to go to Minneapolis on Friday, which is her birthday to take the kids to Chuck E Cheese and have a nice day out. I don't want to go, we had planned to take the kids to Chuck E Cheese on our way home from the hospital on the wonderful day when Alex would finally be sent home from the hospital and that didn't happen.

People think i need to get out of my house. My house is my safe place. I dont' have to see babies, pregnant women, any of it in my house. I can cry without being gawked at, and i'm not 'the woman who lost her baby'.

I find myself feeling very bitter today. I'm mad at God. I try to tell myself that God took Alex home and ended his suffering, but then on these hard days I think that's a bunch of bull, God preforms miracles every single day and he didn't. Why didn't Alex deserve a miracle? Why are prisons full of people that do awful things and yet for some reason Alex, an innocent child's life was taken from him before he had a chance to live it. It makes me so angry. Instead he felt pain every day of his life, for nothing. To have it end anyway.

I'm sure eventually I'll find my way back to my happy place for a while. But not today.....

God, Take This Child....
By Nancy Scott

Sweet child whom we never really got to know,
It’s hard for us to let you go.
We waited and we wanted you.
We had so many dreams for you.

We think of smiles we'll never see.
We think of events that will never be.
There will be no first steps and no first teeth.
There is only a void and our own grief.

We planned to take you to places far and near.
We yearned to keep you safe and free from fear.
We hoped to show you much of your new world.
We wanted to teach you as your life unfurled.

It’s hard to understand why you, our baby, died.
We feel so numb right now, many tears we’ve cried.
We have so many questions and no answers seem to come.
We tried so hard to save you; nothing could be done.

God, we stand before you broken-hearted
and ask you to heal these lives that must be parted
from this little one we can no longer hold,
who will always be a part of us, even when we're old.)

God, take this child in your loving arms.
No more can he suffer any harm.
Bless him always and bless us too.
Be with us and help us to make it through.

God is in control, like it or not

Some days are harder than others. I've found that Alex's life has brought me so much closer to God than I was. I remember on that Monday walkingn to the hospital just feeling terrible about things after Alex's rocky weekend when I just stopped in the middle of the sidewalk in front of the hospital, threw my hands in the air, looked up to the heavens and said out loud 'I give up God, I quit trying to be in control! Let's do this your way' 3 days later he called Alex home. Now I could get angry about this, that I gave God control and he took my child from me..... but instead I feel like rather than taking my child from me, he ended Alex's suffering and took him home. My fight for control with God was only harming my son.

We are going to try to get a copy of Alex's hospital record. I'm sure it will raise a lot of questions but I really feel the need to know the answers to some of the questions I was too afraid to ask while things were happening. I also feel like we need to know as much as we can about Alex's condition, for our sake, for the sake of people we might be able to help in the future, and for the sake of any children we may have yet unborn.

I've had a lot of people ask me what was the main issue with Alex, the issue that he could not overcome. Although we declined an autopsy, we are quite certain it was diastolic heart failure caused by his hypertrophied ventricle (small and stiff). Which caused something called Diastolic heart failure.. Here is a bit of info on it

'Diastolic heart failure occurs when the heart is unable to receive blood normally. The cardiac cycle is divided into two parts - systole and diastole. During systole, the ventricles (the heart's major pumping chambers) contract, thus ejecting blood out of the heart and into the arteries.

Sometimes, however, due to various medical conditions, the ventricles become relatively 'stiff.' Stiff ventricles cannot fully relax during diastole, and as a result the ventricles may not fill completely, and blood can 'dam up' in the body's organs (mainly the lungs). An abnormal 'stiffening' of the ventricles, and the resulting abnormal ventricular filling during diastole, is referred to as diastolic dysfunction. When diastolic dysfunction is sufficient to produce pulmonary congestion (that is, a damming up of blood into the lungs), diastolic heart failure is said to be present. '

Also, people have asked what Alex's heart problem was. I may have explained it early on in his life, as I understood it but now that I understand more, I can give you a better explanation.

Tetralogy of Fallot, pulmonary atresia, absent pulmonic valve

Alex had the most rare and most severe form of TOF. The traditional definition of it is the 4 anomolies:

Pulmonary stenosis- a narrowing of the pulmonary artery and/or valve

VSD- Ventricular Septal Defect. A hole between the 2 lower chambers of the heart, the ventricles which allows oxygen rich blood and oxygen poor blood to mix together before being pumped to the body, giving the telltale 'blue baby' symptom.

overriding Aorta- The Aorta, the artery that pumps blood to the body, is positioned centrally over the VSD

Right ventricular hypertrophy- Stiffening of the right ventricle caused by thickening of the muscle wall

Children with TOF have a boot shaped heart.

Alex's diagnosis was a little varied from this. He didn't have his pulmonary artery, so of course he didn't have the valve either. The PDA or Patent Ductus Arteriosis that fetuses use to circulate thier blood until they are born and thier lungs begin to work is the main, sometimes only way to get blood where it needs to go. This PDA closes normally within the first week or two of life, as the lungs do thier job which is why we noticed Alex having trouble 14 hours after birth, his PDA began to close. Some children have 'collaterals' which is extra arteries the heart grows when it detects an error in design. From what I know, Alex didn't have any, or only a few of these that didn't help him much.

There are some chromosomal abnormalities that can be associated with TOF, and are more frequently associated with severe forms of it. Alex did not have those chromosomal abnormalities so chances are, his heart problem was a fluke and won't repeat itself in siblings or future generations. However, since science hasn't yet uncovered a specific gene for heart defects, it is possible there is some genetic tendancy so our risk of having another child with a heart problem are 2-3% as opposed to 1% which is the risk of the general population.