What is a heart mom?

What is a heart mom?

By Trent Hamilton

My son, Tucker’s, life began very normally, but that all changed very quickly as he was diagnosed with Hypoplastic Left Heart Syndrome at about 36 hours after birth. But this post isn’t as much about Tucker as it is my wife, Dena. Tucker was our first child and we had so many plans for our “normal” parenthood. Dena should have stayed in the hospital for about 48 hours, and then we should have taken Tucker home, continued living our lives with our dogs, in our own home, never to return to a hospital except for a broken arm or some other common accident related to having a boy.

None of it happened that way, though! Dena went from her post-pregnancy hospital bed to chasing a stretcher carrying our dying son to an ambulance to be transported to a different hospital. She didn’t go home with Tucker until he was 1 month and 1 day old and we have returned with him to the hospital several times in his short 2 years of life.   Dena has seen her son only minutes from death, she has entrusted his life to God and doctors twice for open-heart surgery, and she has seen his beating heart through a gaping hole in his chest, while spending countless hours at Tucker’s bedside, alone, in a hospital.

But Dena is not the only one! There are thousands of other mothers who have gone through this same journey and they are ALL heroes! Sure, dads have done these things too, but it is different for us. We dads didn’t carry the baby inside of us, didn’t deliver them, and we don’t usually have the fear that it was something that we ate, drank, did, didn’t do, etc. that caused this horrible heart defect. Dads also don’t, (and will never), get what it is to be a mom. For “heart moms” it may as well be a piece of their own heart that is broken and will never be whole again.

For Mother’s Day, Whole Hearts wants to take a moment and honor all of the moms out there, not just “heart moms”, but all of them. For every “heart mom” there are grandmothers, best friends, sisters, coworkers, and cousins who are touched by Congenital Heart Disease.

Moms are the hands, feet, brains, and backbone of the family, (I’m not really sure what that leaves for the dad, but that is another story).  Moms cook, clean, nurse, work, taxi, discipline, and above all, LOVE. Moms motivate us to be our best and dry our tears when we don’t reach our goals. Moms not only feed our stomachs, they feed our souls; they don’t just provide shelter, they give kids a spiritual foundation on which to build a good life.

Proverbs 31 speaks about the Godly wife and mother. It says that she is more precious than jewels; she is trustworthy; she gets up to take care of the “house”, even at night; she takes care of those in need; she is clothed in strength and dignity; she can laugh at what is to come; she speaks wisdom and teaches kindness; she watches over the affairs of the household and is never lazy; the children rise up and call her blessed and her husband sings her praises (Proverbs 31: 10-28, English Standard Version, paraphrased).

Moms who have, and currently are, fighting the battle against CHD are described perfectly by the above and they deserve to be praised. In addition, the moms who raised us, the moms who support us through tough times and are our friends, deserve the same praise.

So, with my “Whole Heart”, on this Mother’s Day, THANK YOU! Thank you to my wife and Tucker’s mom, Dena; thank you to my mom, Joyce, and thank you to all of the moms who have influenced me and all of the other kids in the world!

Happy Mother’s Day from the Whole Hearts family!

Brothers and Sisters

We read blogs, stories about CHD kids and their parents almost every day.  We’ve come to understand through experience or education, the challenges of both, but seldom covered is how siblings of CHD kids are affected.

Families with multiple children face a very unique challenge, for the parents especially, it becomes a huge time management effort in balancing the needs of your CHD child with the needs rest of the kids.  Striving for and achieving this balance seems quite challenging but not impossible. So is there a mathematical equation for making all of this work?  for reaching that pinnacle?… probably not, as each family unit is different, but there is one common factor that seems to significantly contribute to success – COMMUNICATION.

Families in which siblings of a child with CHD are integrated into the education and information about the condition tend to receive greater “buy-in” from their kids. That is to say, that by including them and talking about the specific form of CHD and all the process, care and procedures that go into making it better, siblings feel more empowered and included.

But what happens when parents have to leave siblings behind while their brother or sister goes into the hospital? ( We’d actually love to hear your input on that.)  We know that ensuring they are in the care of family members; grandparents, aunts or uncles, is always best.  And this support system is essential when communicating complications or procedures, but what’s the best language?  What words to use?

While we searched for substantial answers to this dilemma we found very few resources but we did come across one site that we want to share with you www.corience.org. They have put together this really wonderful FACT sheet for parents so we wanted to highlight some of the suggestions from the author Maria Escuerdo:

Parents need information

Parents frequently feel that the stress and anxiety they endure at this time stops them from finding sufficient emotional peace and quiet to provide the adequate explanations and information that their other children need. However, the siblings do need to be informed.

  • Parents need to make an effort to explain, because providing clear, precise information, adapted to the right level of understanding for the child is crucial in the adaptation of the siblings to the new situation.
  • The illness has to be demystified, and the child helped to understand that his or her sibling’s suffering is not anyone’s fault, that it is not contagious, but that it is serious and requires cooperation from everyone. 

Communication and contact are crucial

Because of the long period of time that they spend together and the ambivalent feelings that are normal during childhood, the ill child’s siblings sometimes think that the negative feelings they have for their brother or sister (when he or she receives more attention from the parents) are the reason for the situation. They might also think that they are the cause of the problem because they argued with their sibling. Therefore, it is essential that parents talk to the siblings about their feelings.

  • The siblings should be encouraged to express their feelings. They should be made to see that the feelings they have (pain, jealousy, worry, fear, relief, etc) are quite normal.
  • The feelings that are justified (eg. pain, sadness, worry, etc) have to be separated from those that come from fantasy or a mistaken interpretation of reality (eg. guilt, abandonment, fear of contagion, envy, etc), which are feelings that need to be eliminated.

Involving siblings helps them to accept

  • Siblings should be involved in the preparations made for the child to go to hospital.
  • If the ill child is offered the chance to go around the hospital or read material about the illness, the other children should be included in these activities, providing that they are a suitable age. 
Full text of Maria’s Blog post can be found by clicking: FACT SHEET FOR PARENTS
Siblings, such a wonderful and integral part of a CHD Child, and another amazing gift for every family.
We’d love your feedback on this topic as it will only help other families.  You can post your comments below.