I was pregnant with our fourth child when we found out that our baby MIGHT have a random genetic disorder, three 18th chromosomes, called “Trisomy 18” or “Edwards Syndrome”. I can remember thinking that I’d had three other healthy children. These people must be mistaken. No way was there going to be anything wrong with MY child.

After a level II ultrasound confirmed ‘soft’ markers for trisomy 18, we met with a geneticist. She would explain what Trisomy 18 (T-18) meant, introduce us to SOFT, and provide us with a T-18 family to contact. In the waiting room, I started crying. I can remember looking around the room, wondering if all the people in this office had sick babies too. I searched their faces to see if their news was as sad as ours.

I began searching for a “happy” magazine in the piles on the tables to take my mind off of the sick baby possibility. Everything I picked up was NOT “happy”. I couldn’t concentrate to read anyway, so I just asked God that whatever he had planned for our family, we’d be able to accept it. Immediately, I began to realize that I was PREGNANT with our fourth child. Lots of couple don’t get a chance at being pregnant. I could feel our baby kicking & moving inside. And I had felt this miraculous gift for three other children too! I believe each child is a blessing, a gift from God. I realized that He had chosen this perfect gift for us. No matter her genes turned out to be. He had chosen her especially for us. I knew that we’d be just fine.

The geneticist told us that Trisomy 18 is a fatal chromosome defect. Children are born with severe mental delays, clinched fists, heart defects, are slow to grow, have difficulty sucking & swallowing, could have up to 150 other various problems. Fifty percent of babies with this syndrome don’t make it to birth & ninety percent die before the first year. Based upon this outcome, many families choose to terminate the pregnancy. Since the condition is considered fatal, the insurance company would even pay for “the procedure”. She said that the doctor who read our ultrasound was only about 30 percent sure she had T-18. He thought he saw clinched fists, a whole in the bottom two chambers of the heart, a large head, and I certainly had excess fluid. We told her that no matter what, we would continue with the pregnancy, but we did choose to have an amniocentesis.

Four days later, we found out that our baby did have an extra 18th chromosome. I joined SOFT that night. As I began to research more & more about Trisomy 18. I was sure that I would find the silver lining… but it didn’t happen. I told my husband that the more I learned, the bleaker the picture.

I felt desperate to bond with this child. So the first order of business was to give her a name. A week later we decided on Mari, which means….”wished for child.” Her middle name would be, Rae… for “sun or light.”

A whirl of things happened in the next months. I read many stories in the SOFT newsletters. We made personal connections with families of Trisomy 18 kids. We heard encouraging words about their progress and development. But what was especially sweet to hear how dear each child was to their family. One family’s baby girl lived for six months, another family’s baby girl lived just two days. I thought if she would be a tough enough fighter to be born, then I would be happy to hold her even for a few moments. During one of my many sleepless nights, I wrote this:

God’s Love

"As I lie awake in bed tonight, I question over & over, why?
Why would You who loves us so much allow our precious girl to die?
I know that You are in control, I remember promises You keep....

But I long to hold Mari in my arms, and watch her fall asleep!
I want to smell her scented head, and kiss her crinkled nose,
And dream about the memories we'll make as our family watches her grow.

I pause to feel her every move, and I can smile at each kick she makes.
'Cause I know You have a plan for us, no matter what the stakes.
The plans You've had for me before, have always been what's best.

So now I have to give it up and trust You with the rest.
For I know it's only with Your strength, I can face the day to day.
For again tomorrow I'm sure to ask, if there isn't another way.

But tonight I thank You for Mari's life and all she's helping us see
She is truly a gift You've given us to show You love our family."

My instincts were to get her room prepared to be able to keep my eyes on the prize. I’m usually an up-to-the last minute person, so this action plan was way out of character. My mom and sister arrived in June to get her room ready. The guest room got a new coat of paint. We set up the family infant crib complete with hanging mobile and bedding. We sorted through bags of clothing from the first three kids. Only the best stuff was kept for her. We washed it and filled up the dresser.

Mari Rae Logan was born on August 24, 2001 at 11:15 a.m. weighing only 4 pounds & 11 ounces. Her birth was miraculous to me. Several family’s had sent copies of their birthing plans, from which we developed our own. Who knew how incredibly helpful it would be to us. Each time I had a contraction, Mari’s heart rate would drop. Each time Mari’s heart rate would drop, I’d quit having contractions. The delivery nurse would run in and tell us they would normally take the baby caesaren if her heart rate dropped that low during contractions. We had chosen not to. I’m not sure that I could have clearly made that decision, if we hadn’t written it down ahead of time. The delivery nurse called my Obstetrician in for his approval to take off the baby’s heart rate monitor. He said that we had left this baby in God’s hands so far, why would we quit now. We delivered her in about 8 hours versus 25 hours being my shortest labor previously. I had one Tylenol-3 for pain after birth & nothing but Motrin for swelling. Since I had basically no pain, I could care for Mari without worry about my own needs.

Mari spent two weeks in the Neo-natal Intensive Care Unit, the NICU to monitor her heart conditions. We thought Mari would die that first week without heart surgery. She had a large duct, (patent ductus arteriosis, PDA) which remained open after birth. It usually closes during the first few hours after birth in a healthy baby. Hers remained open & it was BIG. The cardiologist experience was if the PDA didn’t close in the first few days, it wouldn’t close on its own. Furthermore, he was concerned if it did close it might pinch off (coarctation) the main artery that takes blood to her limbs and that would kill her.

Each day, we would go to the NICU and hold Mari. I would sing to her Precious Lord, take my hand, lead me on, to the land, I am tired, I am weak, I am worn…. On her second day of life, she smiled at me. She has been smiling ever since. In fact, one of her nicknames is “Smiley Baby.”

On day four of her life, one of the neonatologists told us that he could not support a decision for her surgery & it might even be considered unethical. He wanted to make sure that we understood, Mari would be severely retarded. She would probably never smile or recognize her family. To do such risky surgery on a Trisomy 18 baby wouldn’t change her diagnosed outcome. He meant she would still die. And did we even understand what we’d be left with (severe mental delays) if she lived? I wanted to punch the guy in the mouth. Besides, Mari had already smiled at us, and ten percent of T-18 babies DO live past their first year. What did he know?

Well, near the end of the week, Mari’s large duct began to close. The artery the cardiologist thought might pinch closed could be seen better now & he was confident that it was going to be okay. We could take her home without worry.

She has been at home with us since she was two weeks old. People tell us they are so moved by hearing Mari’s story and think we are such an inspiration. We are really not! I don’t like hard things. I’ve never thought I was good at them!

Nothing about Mari’s care has been easy. Even simple things that a parent would take for granted with a new baby--like her feedings. Since her heart has a very large hole in it, she was not able to nurse or take a bottle without tiring excessively. Initially, she ate small amounts every three hours. And I pumped milk for all her feedings. So, by the time I fed her, pumped milk, and ate myself, I would have about an hour to sleep. We did that for four months! We could have only gotten through that time with tons of help from family and friends.

Mari eats through a G-tube now, but initially it was an NG-tube. As many of you know first hand, no parent should ever have to put a feeding tube in their child. But you do because it keeps her healthy & growing. God has definitely shown me that with His help, I can do hard things.

In January 2001, Mari had a heart cath., and we found out that heart surgery was not a option for her. For the first time, I felt the helplessness of her condition. As her parents, we were doing EVERYTHING we could for her & yet it wouldn’t be enough to save her life. I now knew why Trisomy 18 has been described as a syndrome where parents feel like they are just “waiting for their kids to die.” God reminded me that His works are done according to HIS plan and in HIS time, not mine. Deep down somewhere, I knew that He wouldn’t give us this gift if it were a “bad thing.” I realized that each day Mari would be with us now, is not because of medical-miracles, but God-miracles.

We celebrated her birthday every Friday until she was six months old. Then we celebrated her birthday each month until she became a year old. Well now, Mari Rae Logan is 17 months old, and has grown to almost 17 pounds. She’s growing according to her own curve. Her color has always been pink. She’s fairly healthy. My husband brags that she’s the healthiest sick baby he’s ever seen.

Since that first moment, I have never felt ripped off, that we were sent this child with abnormal chromosomes. I have only felt privileged. God has sent us a baby who will be capable of completing His plan for her in a very short time. (After forty some years, I’m still working on understanding God’s plan for my life.) He has opened the eyes of our family to things that we would never have seen if it weren’t for Mari.

Mari is a gift from God & I really feel awed that He chose her for us. God completely orchestrated Mari’s birth, her care providers, the friends & family he placed in our lives to help with her care.

God did not promise us as parents that raising our kids would be easy. He never promised us that we would have Mari for a specific period of time. But he brought us to this parenting place, and he does tell us that he’ll bring us through it.

Loving Mari is not hard. It will be losing her that’s hard. So for now, we choose to enjoy each day of her life, rather than “wait for her to die.”