Luke Daniel

October 31, 2004

My husband, George, and I married in June of 1992. We didn’t plan on having children. I worried about what my children would encounter in the world and had this fear for years. Then in 1996, I visited Toronto Airport Christian Fellowship and received prayer there and God began making some changes in me and healed me from some of the fears that had held me for so long. I actually started thinking for the first time in years that it would be ok if I had children. These inner healings God performed within me were tremendous.

On May 24, 2001, our first son, Steven, was born. He is 3 ½ years old now and is the best thing that has ever happened to me and my husband! We both agree on this. I quit my medical records coding job of nearly nine years to stay home with Steven after he was born and am still a stay-at-home mom.

I wanted to have at least one more child. I wanted Steven to have a brother or sister relatively close in age whom he could grow up with. On April 7, 2004, we found out we were expecting another baby! I was thrilled! It was a wonderful surprise. I was very tired throughout the first trimester (and beyond). I noticed that my abdomen got big a lot faster than it should have and wondered if I was having twins. I had nausea, but it wasn’t too bad. It was harder keeping up with my 3 yr. old son, but I did the best I could and he was a happy little boy. (and he still is, thankfully!)

One of the things that was very different with this pregnancy than with my first pregnancy was I just felt like I couldn’t get excited about it. I felt bad about that and tried to be excited but I just “couldn’t believe I was pregnant” or “couldn’t believe I was going to have a baby”. This bothered me. I kept wondering if something was wrong with the baby. Something just didn’t feel right. But, I thought, well, maybe it’s just that my hormones are out of balance or something. 

We had put our house on the market in January wanting to move closer to the Lutheran school where we planned to send Steven to school. In May, George started a new job, then we got an offer on our house. 

Eight days before we moved, I went for an ultrasound. I was 18 wks. along. I remember saying before I went, “I hope nothing’s wrong. I hope the baby’s ok”. (I never had thoughts like that with my first pregnancy.) It’s like I sensed all along that something was wrong, but I just didn’t have any proof of it so I hoped my feelings were wrong. And I honestly thought everything would be ok regardless of all the strange feelings I was having.

When I went in for the ultrasound, the technician pointed out different parts of Luke’s body and said his heart was fine, his stomach was full so that meant he was swallowing, kidneys were working fine. I was sooo happy and “excited” finding out we were having a boy and seeing him move! He was kicking and moving. I could see his fingers and his little feet. I was so happy and finally felt excited and like he was really going to be alright! It was such a relief to see him on that screen after wondering for four months if something was wrong.
Then she said his head was down really low. I said something like, “Does that mean something’s wrong?”. (I’d already asked her those kind of questions throughout the whole ultrasound. I had been worried ever since I took the first pregnancy test.) She said, “No, it just makes it hard for me to see it.” Then soon she was finished with the ultrasound and she said, “Who’s your doctor here”. I told her. Then she said, “Do you have a check up today?”. I said “No….WHY?” (I’m not a total idiot. I was beginning to realize these weren’t the questions I should be hearing.)

She said “because I do see something wrong. I think there’s something wrong with the baby.” I think at that point, adrenaline starting shooting through my body. She brought in another nurse and she was asking me if I could go in the next day to see my doctor because there were no doctors in that day. I said. “Well, can you tell me what you think is wrong?”. She said., “We’re just not seeing what we’d think we’d see.” Then they took me to the front desk and they quickly disappeared back into the files with my ultrasound pictures. The girl at the desk was as cold as ice. I asked her, “Is there another doctor who could look at the results today?” She said no. I left and burst into tears.

I drove home. My mom was at my house with my son, Steven. I told her, “It’s not good.” I didn’t even try to figure out what could be wrong with Luke. I didn’t want to torment myself any more. I couldn’t help thinking though that the technician never commented on his head and I kept thinking “it must be something with the baby’s head.” I started praying that Luke’s brain would be formed. (even though I’d never heard of anencephaly and didn’t know what was wrong, it only made sense that if it was something to do with his head, it must be that his brain hadn’t formed properly.)

My husband wasn’t able to go with me for any of my doctor appointments because he couldn’t get off from work. My mom went in with me the next morning. They took us back to this room with information packets and pictures all over the walls. I thought something like, “Oh, this is bad.” I felt like I was a kid waiting in the principal’s office. When my doctor came in, she said basically that it was really bad news then told us Luke had anencephaly. My mom said “We’re going to have two babies in Heaven.” (My sister-in-law had had a miscarriage eight months earlier.) I wanted no talk of my baby dying. I just wanted everyone to pray for a miracle. I believe in miracles! And I thought I had to find out what caused this so I would know how to pray about it. I went home and got on the internet. I was so exhausted, not only physically but emotionally too.

Then I started having strange thoughts and feelings like maybe my baby wasn’t really alive and maybe people would think I wasn’t really pregnant anymore. I wondered if people would think I shouldn’t act pregnant anymore.

I joined the Anencephaly Blessings From Above online support group and as I read the posts and looked at the information on there, I began to realize that others had prayed for their babies to be healed and believed, but didn’t get the miracle they had hoped for and I had to accept the fact that there was no guarantee that my baby would be healed. Reading the posts on there actually gave me hope though because I began to realize that even though my baby had anencephaly, he was still very alive and the women in the group helped me to realize that there were things I could do to enjoy my time with Luke and to remember him. This was very comforting to me.

The morning we moved, I had vertigo, but got over it quickly enough to drive the 55 minute drive and get to work organizing things. I was too tired to do much but I probably still did more than I should have. My parents helped a lot.

Then, after moving, I had to find a new OB doctor. I made several calls and none of the doctors in this area would accept me as a patient since my baby had anencephaly. They said I’d have to go to a perinatologist in a nearby city. I didn’t want to drive all that way for my appointments. I didn’t even have a babysitter for my son. Then I found another doctor in the phone book that said high risk and called them. They accepted me right away and he is a wonderful doctor. I’m so thankful to God that I found him.

By the time I was in my last trimester, it was evident that I had polyhydramnios. This is a condition where the amniotic fluid builds up because the baby is unable to swallow. I measured 40 weeks size at my 33 week check up. The day after that check up, I started having a “bloody show”. The next day after that I was having contractions and went into the hospital. The contractions stopped so my doctor sent me home. That night I was in a lot of pain all night and didn’t sleep at all. Then at 7 am the next morning, October 31, 2004, my water broke. I got to the hospital at 8:30 am and Luke was born at 12:32 pm (four hours later). 

The nurse handed him to me right away and said “There’s been no respiratory and no heart beat.”. I said “No heart beat?” (we’ve got it on tape, otherwise I wouldn’t have remembered asking that.). Then the other nurse said “let me try” and she listened and heard a heart beat! Oh, thank God! Luke’s heart kept beating for one hour. A few weeks after Luke’s death, I learned from friends in the ABFA support group that Luke actually was breathing. I wish I would have known that while he was alive.

My in-laws came in and my FIL baptized Luke. He is a Lutheran minister. My father is a Methodist minister. My parents and Steven came in later. Steven was amazed with his little brother. He touched his feet and his hands and face and was absolutely thrilled to see him.

I’m so thankful we had Luke and that we got to hold him and spend time with him. He looked like me, my husband, and our son Steven! He was so beautiful! We’ll love him forever! He had blue eyes, brownish blond hair, weighed 2 lbs. 9 oz, and was 13 ¾ “ long.

My husband and I stayed in the hospital until 6:30 pm that evening, then we left. It was hard leaving the hospital without our baby, but God gave us His peace and the strength to get through it. As soon as we were in the truck, we both realized we missed Luke’s sweet baby smell. I guess there are some things you just can’t keep.

We will never forget our second son, Luke Daniel. We know he is safe in Heaven with Jesus and look forward to seeing him again one day.

Mary Sue

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