Due to my age we wanted to conceive as soon as possible after our daughter Leah’s birth.
After trying for 5 months, we found out I was pregnant. I was due a day before my 37th birthday, February 8, 2003. We were very excited, but I just had a nagging feeling something wasn't right.
On August 2, I went for my first prenatal appointment as scheduled. When my OB tried to find the baby's heartbeat, she was unable to do so. As a precaution, she ordered an ultrasound.
The technician found the heartbeat right away, but was acting strangely. She told me to schedule an appointment with my Obstetrician for the following week to discuss the ultrasound results.
I have never had to schedule an appointment for an ultrasound review, so I knew something was wrong. I immediately called my obstetrician knowing that she had already spoken with the technician. I asked her what was wrong with my baby. She said they weren't sure, but the head appeared abnormal and the eyes were too close set.
They thought it was best to 'wait it out' and see if things would straighten out as the baby developed further over the next few weeks. My next ultrasound was scheduled for September 5th.
During the time between the ultrasound appointments we prayed for the best, but tried to prepare ourselves for the fact that our baby likely had disabilities. We honestly thought that it was Down's Syndrome and were confident that we would be wonderful parents to that child.
On September 5th we went for the follow up ultrasound. I was nervous, but not remotely prepared for what we heard. The technician did the exam and was very professional throughout, giving no indication that there was a problem. She left to get the Maternal/Fetal Specialist who would review the exam with us.
He walked in with an uncomfortable smile, paused, and then said, "What we are looking at here are multiple congenital abnormalities that are incompatible with life."
Our baby had severe brain abnormalities, 3 major heart defects, and an enlarged polycystic kidney. The brain in all likelihood would not be able to regulate basic functions such as breathing and heart rate.
I have never felt the blood drain from my body like it did at that moment. I was shaking/shivering and crying, my heart pounding so hard I thought I was going to faint, fear so intense I couldn't swallow.
I asked them if they were able to determine the sex of our baby. The technician informed us that we were having a baby boy.
She hadn’t mentioned it during the exam since she was not sure if we were going to consider termination. Often, people who terminate feel that the less they know about their baby, the better.
I said there was NO WAY I was terminating this pregnancy.
The doctor told us to take a few days to think about it, (up to 95% of babies with his abnormalities are terminated).
I said that I didn't need time to think about it.
Regardless if his abnormalities, he was God’s gift to us.
We had amniocentisis performed to find out if his problems were due to a chromosomal abnormality. We needed to know if it was something that could be passed on to future children should we try to conceive again.
The results came back that he had Trisomy 13, a rare chromosomal disorder. He had three 13th chromosomes in every cell in his body instead of the usual two. It was a genetic fluke. We were alternately crushed and relieved. Crushed because it swept away any fantasy of him living that we may have had. Relieved that we could try again, if we wanted to.
I decided to savor every second of my pregnancy knowing it would probably be my only time with him, but hoping he would be one of the 5% that survive their first year (the average lifespan is 4 days). I would lay awake at night when everyone else was asleep and I would talk to him, telling him how much I wanted him. I would smile as he played and wiggled, and I would give him a rub. I loved him so much it made my heart hurt. He had an adorable personality, a silliness that made us laugh.
He liked nothing on his space (my belly). Anything placed on it was met with a swift kick! He was so active it was hard to believe things were going so horribly wrong.
Usually when you are pregnant you can't wait for the end result, having that baby in your arms. I didn't want my pregnancy to end...
He was content and safe as long as he was within me.
It was hard to believe that he would never pick me dandelions to put in a jelly jar on the kitchen windowsill. He would never grab at bubbles and stare in amazement as they popped when tiny fingers touched them.
I would watch Leah and my heart would burst at every new thing she did, and then immediately sink when I realized my baby boy would never reach those milestones.
During the subsequent months of the pregnancy, we struggled to control the outcome as humans often do, wondering how to handle details that might never even become an issue. We finally realized that things would happen as they were meant to happen.
People were amazed at our strength and our sense of peace, things we were only able to accomplish after we handed our child’s fate back to God, it’s rightful owner.
We chose to name our little boy Kolm Ronan. Kolm is an Irish name that means ‘dove’. Ronan is a Celtic name that means 'I pledge'.
We chose the name Kolm because a dove represents peace, hope, and unity. Three things we truly wanted for him.
Peace... more than anything we prayed his time
would be filled with peace.
Hope...we hoped that he would survive long enough for
us to comfort him, to tell him how very much he was loved and wanted,
how much he would be missed.
Unity represented the family he would always be a part of even though his time would be brief.
We chose the name Ronan because we made a pledge to him
to see him through this, to let him know his life DID matter, and
to squeeze a lifetime of love into a few months.
On January 1, I woke up with light spotting. All three of my children were born on their due dates, and since his was still five weeks away I wasn't immediately concerned.
I called my Obstetrician two hours later when it hadn't stopped.
She told me to come in to the hospital since preterm labor can be more subtle.
When I arrived, I was already 7 cm. dilated. They did an ultrasound and he looked wonderful! His heartbeat was strong and he was wiggling around. We were so excited to be meeting him, and we thought that since he was doing so well during the labor, we would have him for a little while.
There was some concern over the size of his abdomen. Though everything else measured small for 35 weeks (common with Trisomy 13 babies), his abdomen was extremely distended due to his polycystic kidney. The medical team reviewed everything carefully. They felt that his abdomen would be soft and should not present a problem during a vaginal delivery.
Unlike ultrasounds during the first and second trimesters, late term ultrasounds are not as accurate when determining true size.
His abdomen was much larger and firmer than they anticipated.
During the delivery, his cord was compressed between his abdomen and the birth canal. Due to the lack of oxygen, he was unconcious at birth and never recovered.
We were completely devastated.
They immediately handed him to me and left us alone. Though his precious heart was beating initially, we never got to hear him cry or saw him take a breath. The heart that was so flawed kept beating for nearly 30 minutes before my beautiful baby died in my arms. I could not believe that a couple of hours before he looked so wonderful, and now he was gone.
We kept him with us for many hours, inviting our families to meet him, hold him, and say goodbye.
He was gorgeous. I am sure when people look at his pictures, they do not see him that way.
I see him no other way. We were told how deformed he would be. 80% of Trisomy 13 babies have major facial deformities such as Cyclopia (one eye), absence of a nose or a tube like nose, and a cleft lip/palate. They usually have extra fingers and toes.
Yet, he had 10 perfect tiny fingers and toes, beautiful little lips just like his daddy's, and gorgeous golden reddish hair...a color that I have never seen on anyone before. I called it his halo.
Though his eyes were poorly formed under the lids (he would have been blind), he just looked like he was sleeping. The only obvious deformities were the size of his abdomen, and his nose had just one nostril.
We knew the cause of his death, but we requested that an autopsy be performed with medical students present, so they could see the devastation Trisomy 13 has on a tiny baby. They read about it in their studies, but few ever experience it firsthand.
We wanted as much good as possible to come from his life...
It is the most heartbreaking thing I have ever experienced.
Many people said, "well, at least you knew and had time to prepare".
You are never prepared for the agony of holding your child as his life slips away.
A child you wanted and loved so very much.
I think about him and miss him every day. I had so much more peace once I let it in and allowed it to change me. I think it will always be there, but you are able to put it in a place that you can live with.
Life is becoming 'normal' again. It's just a new kind of normal.
Would I wish him away, wish that he had never been born if it meant I didn't have to go through the pain? Absolutely not.
As agonizing as it has been, having him a part of my life has been worth it.
He brought me so much joy in the 8 months that I did have him. I believe he touched more people in his short time than some people do in a lifetime. Though he didn't survive, he was still a miracle.
When I reach the end of my life, I will look back and know without a doubt that my life would have never been complete without him. It is an indescribable love.
I often hear how lucky Kolm was to have a mommy like me.
They have it all wrong. It was a privilege, an honor, and
a BLESSING that I had a son like Kolm.
edited to remove siggy. Sorry! I hope no one was offended!
May 14, 2006:
Three Mother's Days have come and gone since you left, my sweet boy. I woke up today to your big sister and little brother jumping on my bed yelling "surprise!".
Though it made my heart overflow, there was one little one missing. It is always most obvious during moments like this.That twinge of aching sadness that grabs me when I think about how much I want you to be jumping on mommy too. I think about the fact that you never got the chance to play with Leah and Kieran, and that they will never know you. Kieran was sitting on my belly like I was some kind of horse this morning. He looked up on daddy's dresser and saw your urn. He pointed to it and said "baby!"
I can't help but hope that it was my Mother's Day gift from you. A reminder that you are still here...
Some days still hurt more than others. That is something that I accept, and a price I will always gladly pay for having you in my life.
A few weeks ago, someone at work said to me "You don't seem like someone that has lost a baby. You always seem so happy."
Hmmm...take one part acting (some days that's a big one!), and add many parts peace. That's what you come up with!
I still have a complete sense of peace in the fact that, though you never took a breath, your purpose was served. I may never know what it was/is, but you, my precious boy, were meant to be. My purpose was to love you and give you a safe place to be for the time you needed. So on my third Mother's Day without you, you can be sure that I still have no regrets...I am still blessed. Hugs and kisses up to Heaven, sweet baby of mine...
I just have to say that you are such a strong woman God bless you and your Dh.
This story made me cry, i am so sorry for your loss.
Shawn & David
EDD FEB 22 2005
I too, was completely touched to read of your precious Angel Kolm. You truely are an amazing woman.
Lori, I was touched by your words...
The feelings you've experiences are shared by many, thank you for expressing them so eloquently.
Kolm sounded like a very, very special boy... his story left footprints on my heart.
You are a strong woman and you baby was lucky to have you as a mom. As you were lucky to have a wonderful little boy.
Thank you for sharing.
Nicky Married to Dan on 2/28/08
Mom to Sebastian, my lil guy who came 6 weeks early 8/27/11
Mom to Samuel. my extra lil guy who came close to 14 weeks early 8/1/12
and always in my heart forever s 1/23/03 &7/23/03
Letters to Sebastian http://librababy.wordpress.com/
Letters to Sam and also our NICU journey http://scorpiobaby.wordpress.com/
Rasing the Brothers Phttp://raisingthebrothersp.wordpress.com/
Thank you for sharing Kolm with us. (((HUGS)))
Thanks for sharing your story! I'm sorry for the loss of your sweet baby boy. My daughter was handicapped and I am told all the time that she was lucky to have a mom like me...I couldnt agree with you more that I was the lucky one to have a daughter like her!
mom to Jacob
Amber, my angel in heaven
8-5-98 to 7-7-03
#3 due 10-12-04
Your story is amazing!
Oh Lori, I happened by this board for some reason.. and then saw your post. Then I realized Kolm's birthday had just passed. I was brought to this board for a reason.. and now I know why. I remember talking with you the months before and after Kolm's birth and was so touched by your love and selfless heart. I've missed you, my friend.