Malachi Dam

If Hypoplastic Left Heart Syndrome (HLHS) could have a poster child our one year old son, Malachi, might be it. He’s stinkin’ cute, funny, full of energy and has a story that can break your heart.

He was taken from us less than two hours after his birth, hooked up to machines and given a 75% chance of seeing six months. And that was only if he had two complicated open-heart surgeries before then and another one at 18 months.

Malachi was basically born without the left side of is heart. Hearing this unfathomable news minutes after he entered the world, our world stopped. Or rather, it went into a galactic tailspin. We didn’t know that about one in every 100 kids is born with a heart defect (though most are not as serious as our Kai’s). We had been living in Uganda, East Africa so all our ultrasounds has been too basic to detect that there was something seriously wrong.

Uganda. We would not be going back home or to our jobs there. We would not be living the life we imagined providing for our children. We would not be taking for granted that our precious baby would survive long enough for us to get to know him.

But he did. Through rivers of tears and blood and pain and drugs and heartache and prayers, he did. I can’t explain the searing ache of sitting in Intensive Care and holding his tiny hand for hours, through all the wires and tubes, and not being able to hold him close to me. Or the trust it takes to repeatedly put his precious life in the hands of his excellent surgeon, Dr. Devaney, and the rest of the medical team at U. of Michigan. Each surgery for HLHS is difficult, risky and has only been performed for about 20 years. If I had been born with Kai’s heart, I would not have lived.

It is essential for my beautiful son and the other children with heart defects (more of whom are born every day) that we do as much research as we can. Relatively little money is put into this branch of medicine and for whatever reason that is, I would beg those with influence, finance and skill to look into the eyes of a mother as her newborn is wheeled through the doors of the operating room, or to gaze on the weary face of a father who checks every nightly hour just to be sure his child is still breathing. Look at my son, full of promise, who cavorts with his sister. He’s already a survivor, though he’s too young to understand what we have been through together…or what is coming.

In my heart of a mother, joy is mixed with worry, and thankfulness that Kai is so vibrantly alive mingles with dread because I cannot know what the future holds. Our family has somehow found a way to deal with the situation that faced us at Kai’s birth: since returning to Uganda was not an option we were suddenly homeless and unemployed. We were faced with relocating our family, and unsure of how we would make any money since my husband is Canadian. On top of this there was uncertainty of health insurance coverage for those phenomenal hospital costs… as well as all the regular grief and worry and overwhelming fear that lives in every family with a sick child.

With help from family and friends and a lot of answered prayers we now have our own home and a steady income so that we can provide for our children. But we take nothing for granted. Every day of life is a blessing. Our greatest hope is that research and awareness for CHD’s will increase so that our son can not only live into his teens but be given the opportunity to bring his warrior spirit to maturity and his survivor strength into adulthood.

We are asking for a voice for the 40,000 babies from all kinds of backgrounds who are born every year in the U.S. with Congenital Heart Defects. There is no price tag for their lives, for the contribution that they can make to our society, or for the fierce love that surrounds them. We are asking for society, government and medicine to let us know that our children are not alone; that our hope is not ungrounded.

For its only hope, and love, and faith, that get us through each surgery, each doctor’s visit...each day. Please help us let our voice be heard.

With ALL our hearts,

Rena, Tim, Makeda and Malachi Dam