Note from the Motherlode Moms: One of the best, most rewarding parts of publishing this website is how it brings us into contact with some of the most amazing mothers who happen to live right here in Northwest Arkansas. In the incredible story below, you’ll meet one of those moms, Linda Richards, and read about her journey in her own words. We know it will touch you the way it has touched us, and we hope it moves you to get involved by helping Linda help other local moms.
His birth…
Declan Alexander Richards was born at 11:09 am on March 19, 2008 at 25 weeks and 5 days gestation. I was exposed to Fifths Disease and passed it on to our son while pregnant, which caused him to develop Fetal Hydrops. Declan was delivered by scheduled c-section but not before our perinatologist extracted 100 cc of fluid from his abdomen and transfused him with fresh blood. Declan weighed in at 2 lbs 6.6 oz and 13 inches long.
Six months earlier…
We found out in October of 2007 that we were expecting our third child. In January of 2008 I had a confirmed diagnosis of Fifths Disease. We found out that I not only had the active virus (Parvo B19) but I had also been exposed in the past and should have built antibodies against it. This scenario is so unlikely that the lab had re-run the tests to be sure.
If you know about Fifths Disease, which I had not until I was being tested for it, once you get the virus you “never” get it again. It is also a harmless virus except for pregnant women or those with compromised immune systems.
Our plan was to go in at 20 weeks gestation for an ultrasound and then again at 24 weeks to do an ultrasound each week for 4 weeks to check for developing fluid in our baby’s body. The fluid occurs when the baby becomes anemic from the virus and cannot produce enough red blood cells. If the fluid is significant, a baby will be diagnosed with Hydrop Fetalis. A textbook case is eight weeks from infection would be the earliest a complication would show.
The diagnosis…
On March 6, 2008, Dr. Smith, my doctor at the Pinnacle Women’s Clinic, sat beside me and told me there was a “fair amount of fluid” in our son’s abdomen surrounding all his organs. My belly had measured 27 weeks gestation instead of 24 due to our son’s body swelling with fluid. Our son was in a life threatening situation. On March 10, we met with Dr. Thompson, the Perinatologist in Joplin, Missouri who sees high-risk patients in our area. His first option for us was to wait and see if our son could heal himself in the womb, which has been known to happen.
We were in a sticky situation with me being just over 24 weeks pregnant. If I had been exposed to the virus one month earlier it was almost certain I would have had a miscarriage. If I had been exposed one month later I could have either delivered early with fewer risks to our son or not caught the hydrops and delivered our son stillborn. We were at the edge of high risk for any route we chose to take for treatment, but a positive outcome was possible.
The treatment…
Over the next few days I had steroid shots to help boost our son’s lungs in case of an early delivery. On March 17, we were told the hydrops had not improved; the lining of our son’s heart was thickening because it was working so hard, and that the doctor partly didn’t expect our baby to be alive when we walked in. Our son had a 50/50 chance of survival being born at 25 weeks.
Performing an intrauterine blood transfusion was risky and the only good option for us. Based on his recommendation and the local neonatologist, we all prepared for an early delivery following an intrauterine blood transfusion. I desperately wanted a second opinion but was scared that time was not going to allow it.
Declan’s arrival…
We arrived two days later on Wednesday, March 19th, to deliver our strong, baby boy we now called Declan.
Declan had numerous health complications from the virus and prematurity, but he was growing and thriving. We began making plans for his homecoming from the NICU (neonatal intensive care unit) as he got stronger and healthier.
Soon after his two-month mark, he became very sick and was diagnosed with necrotizing enterocolitis (NEC). He had exploratory surgery in Kansas City, Missouri at Children’s Mercy Hospital. The doctors discovered nearly all of his small intestines had died from infection. There was nothing the doctors could do to help Declan heal. Declan passed away at 9 weeks, 2 days old peacefully in my arms.
After…
When I started this journey, I had no idea where it would take me, but I thought it would end with a happy ending. I thought Declan would grow up, and I would tell him stories about what a miracle he was and how many people around the world prayed for him. I would tell him all about what he overcame in the hospital and how strong he was.
I documented our journey through the nonprofit organization CaringBridge dedicated to families blogging about a loved one with health complications. What started out as baby updates became a personal diary of loving my child from the NICU. Later I would describe my struggles with grieving for our son.
Declan’s story online…
I did the blog for a few reasons. First, I wanted to be able to update our friends and family on how Declan was doing and ask for prayers. Secondly, I wanted to document what was going on in the hospital as a way to capture the memories we would look back on for the rest of our lives and marvel at the work of God.
I wrote about all the boring medical mumbo-jumbo as a road map to show where Declan started and where he ended. I thought it was a way to diagram and gauge the progress I was sure he would continue to make. I thought we would have a happy ending. I didn’t plan on spilling my deepest thoughts out to hundreds of people, and I certainly didn’t think so many would follow our story.
Throughout our journey, I discovered that writing was a way for me to cope with being away from my friends and family — a way for me to feel connected to others. I discovered the joy of my new friends and family. I discovered that we human beings all need each other to lean on. Me, living in my perpetual private self, needed others.
The darkest days…
My experience opened my eyes to a world I didn’t care to come to know. A world of real suffering. Not a Monday night Lifetime TV movie, but real life. I wasn’t ready for it. No one is ready for it. It rocked my world in a way I wish didn’t exist. Declan was so very special; he was a child of God in every interpretation of the text.
I found myself months later trying to make sense of my life and trying to discover who I am now and who I want to be. I desperately wanted the pain of my grief to disappear. I wanted to understand why Declan endured all that he did. I pushed away the anger as it bubbled inside my body by stating out loud all the things I was grateful for, so my soul could hear it clearly. I fought through the grief allowing myself to feel everything while trying to gain control of rational thought.
When grief met inspiration…
I was at a point where something had to change. I sought out to do something, anything productive so I could say it wasn’t all for nothing. I thought about many charitable causes and how unfortunately, someone suffered in order to bring enough passion to make a difference in someone else’s life. This was when I gave birth to my nonprofit organization “Its No Monkey Business.”
Based on my experience and the mentoring I received from the wonderful staff at Freeman Hospital in 
Joplin, Missouri, I created a brochure filled with mom-to-mom advice on loving your baby in the NICU. I also make gift baskets filled with items corresponding with advice for the mothers who have long-term stay babies in the NICU.
By finding a way to help another mother feel less alone, I heal my own broken spirit. It was the staff at Freeman Hospital, the loyal readers of my blog, and my desire to believe in the comfort of Jesus who took hold of my right hand and got me through some of my darkest hours. As I travel through what my story is and what my story will be, I find we all are a work in progress. We get up in the morning and take it one step at a time, one day at a time.
“For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.”
Isaiah 41:13
Be sure to come back to this website tomorrow to read about a simple, easy way you can help support Linda’s non-profit organization called “It’s No Monkey Business.” (www.itsnomonkeybusiness.com). Your involvement will help fellow moms whose babies are in area NICU units.
I was one of those Moms that received a gift basket when my twins were in the NICU at Freeman Hospital in Joplin, MO. It was truely a blessing and inspiration to read about Declan and to have someone giving advice in a truely scary and challenging time in our lives. Linda, THANK YOU for all you do. Your baskets do make a difference and are a comforting touch to the NICU babies. I am happy to say that my twins are now 11 months old and doing great. I am truely thankful for my healthy children and I look at my time in the NICU as a blessing as well. Motherhood can be tough, but when I look at my children I remember how small and helpless they were and I don’t take them for granted. Thank You.