There is no greater loss than that of a child. From the first moment we hear the thumpity-thump of their tiny heart’s beat, we know that our lives will be changed forever. For a mother anticipating bringing home a baby and watching her grow, losing that child can prove far too overwhelming. As October, Remembering Our Babies Month, comes to an end I’d like to take this opportunity to share my story with you. Please know you are not alone and there is help out there.
Early in 2006, my husband, my mother, my two year old daughter and I sat in the sonographer’s room anxiously waiting to find out the sex of our new baby. The sonographer’s jovial disposition was clouded by eyes deep in thought. She excused herself, and hurried out of the room. A few moments later we were escorted to my doctor’s office where he sat with his partner examining the pictures of my precious baby. My mommy-instinct told me that there was something terribly wrong.
He informed us that our son (yes, the son who was to complete our family) was sick. My doctor shuffled us off to a specialist in New York City. The specialist was the best of the best, the man who wrote the Perinatology textbooks, so if anyone could help us, it would be him.
Apparently, no amount of education or expertise can make up for a serious lack of bedside manner. He coldly and callously informed us that our child had Multicystic Dysplastic Kidneys - a condition that when only effecting one kidney can be managed, however if it effects both kidneys, as in our son’s case, does not support life. He coolly asked us what day would be most convenient for a termination. Before I could get up and slap him my mother and husband asked for him to give us time to absorb this. I begged him to find a cure for my son, an alternative of any sort but he refused saying that there was no cure. I refused the termination and decided to do some research of my own.
I found the leading Pediatric Nephrologist and told her my story. I thought I would have to beg her for a consultation, but she so willingly agreed to fly out and meet with me…on a Sunday night. When I got there, no one else was in the office and it was already after dark. I offered my medical insurance information, and she declined saying that the heartache she had heard in my voice was worth her time. She performed her own sonogram and sat me down to discuss my options. She agreed that there was no chance of life for my sweet baby boy, but that there was no harm in my carrying the pregnancy as long as possible. She informed me that he would have to grow to twenty-five pounds before he could undergo a transplant, and that was just not going to happen. She also said that if he were born alive he would only live a few moments. I knew that those moments were the few that I needed.
I spent the next few months paying such close attention to learning his favorite foods, what songs he liked to dance to, and what time of day he had the hiccups. I read him the books I had planned to read him throughout his childhood and had his big sister sing him songs. His father told him stories about being a soldier in the Army and all the things he wanted to tell him when he grew up.
After 36 hours in labor, our beautiful son rested peacefully in my arms while his father and I sung to him, spoke to him about a time when we would all be together again and said the most emotional goodbyes of our lives. He only lived a few short hours, but they are the hours I will hold on to for the rest of my life. We named him after his father and buried him at the military cemetery where my husband and I will eventually rest with him.
Leaving the hospital without a baby is an emotional obstacle that takes a great deal of time to work through, but it is important to remember that there is help. I have found strength and courage through online support groups and friends with whom I share this tragic bond. I have also participated in Kidney Disease research fundraisers. I have found solace in writing poetry and doing things I once loved to do like playing the piano.
If you, or someone you know has dealt with this great loss, here are some resources where you may be able to find the help and comfort you need. You are not alone, and talking really can lighten the load you are carrying - you don’t have to walk this journey unaided. Start by calling your insurance company to locate a bereavement counselor in your area and in the meantime, take a look at some of these resources for support online.
This Article was Written by Kristen A. Hoffman.
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