Grief Library

Ian's Story |

by Cindy and Toby Miller

Ian was born with a birth defect known as anencephaly, which means his neural tube did not fully close, leaving his skull open and the brain not developing in some areas, and growing outside his skull in other areas. From the top of his forehead to about the middle of the back of his head, was covered with skin, but was soft where no skull had formed below the surface. His brain stem was exposed; however, when we put a hat on him and kept that area covered he looked like a normal, healthy newborn baby. He was beautiful and precious!

The doctors don’t really know what causes this birth defect, but believe it may have something to do with a lack of Folic Acid in my body. We found out about Ian’s condition when I was 16 weeks pregnant with him when I had my first ultrasound. One of our doctor- specialists tried to persuade us to "terminate the pregnancy" then and there since Ian’s condition was not compatible with life and since they said he would probably be born stillborn anyway. However; it was a "surprise" that we even got pregnant and we felt from the beginning that God had given us a gift—the baby HE WANTED US TO HAVE—so we did not even have to think about whether we should terminate the pregnancy or not. We just KNEW we would carry him to term—no matter what the end result was to be.

The pregnancy went fairly smoothly, and about three weeks before Ian’s due date, we found out he was also in a breech position, and was tucked way up under my rib cage. At first, we thought "Great! What else could go wrong here!" But then, we decided it was kind of a blessing in disguise because I would be spared a long and inevitably very hard labor, by having a quick C-section. My doctor felt it was in my best interest , as well as hers, to deliver Ian this way, due to his anencephalic condition. He was born on November 28, at 11:45 am. He weighed 5 pounds, 15 ounces, and was 18 inches long.

We had so many miracles happen while we were in the hospital and I really want to share them with you all. First of all, God made my surgery go very quickly and very well. I healed up within about two days and I feel He did this so I could have more time to take care of Ian and could enjoy him in the short time he was with us. I actually felt too good after the surgery and felt like doing too much—it was hard to not bend, or lift, etc. Second, we were led to believe by our doctors that Ian would either be born stillborn or would only live a few minutes or at the most a couple hours, and guess what? He lived 9 days! Now here’s the really interesting part…

Some babies with anencephaly don’t have the swallow or sucking reflex and cannot swallow and Ian couldn’t, so we couldn’t feed him for those nine days. We could’ve hooked him up to a feeding tube, but we were prepared that he wasn’t going to live and we didn’t want to prolong his agony by doing that. So he had no food and no drink for 9 days, but yet, he never cried as if hungry, he never looked or felt dehydrated, he kept having poopy and wet diapers, and he didn’t lose any weight! His doctors and pediatricians were amazed and said that even a normal, healthy baby couldn’t survive for more than 2-3 days without nourishment! We know it was God that was sustaining his little body.

We felt pretty guilty not feeding him and struggled a lot with our decisions, but were told by the doctor that the part of Ian’s brain that holds the pain receptors wasn’t developed and he more than likely did not feel any pain. This relieved us some; however, it was hard because daily, the hospital had to ask us if we had changed our mind on the "do not resuscitate" order and whether we wished to change our decision to feed him intravenously or not. At times we felt like terrible parents, but we prayed often for peace about what we needed to do. Anyone could look at Ian and see that he was very peaceful and content, and this helped us a lot.

Another miracle we received was that we got to enjoy watching Ian smile and grin and laugh almost the entire 9 days! (I have been told by many that newborn babies do not do this yet, so I feel like this was a special surprise gift from God!) We always joked that whenever Ian was smiling, that he was laughing with the angels! Occasionally, too, we got to see Ian open one or both of his eyes and he would look around. We didn’t get to see this too often though—most of the time, he kept them closed.

Also, it was quite a miracle that Ian’s brain stem was exposed to air since birth, but he never contracted meningitis or any infection. His little body had some jaundice, but other than that, he seemed pretty normal. He always squeezed his mommy and daddy’s fingers too, as if to let us know he knew who we were and that he loved us as much as we loved him! We PRAISE GOD for all these miracles! We know little Ian was born this way for a reason and God had (has) a plan in all this. Ian touched so many lives, and was such a strong testimony to the great love of Jesus. The nurses at the hospital couldn’t stay away from him. They continually came in to talk to him or check on him—even on some of their days off. And he puzzled and amazed his doctors and pediatricians. They didn’t have anything to gauge this experience off of and were shocked that he lived as long as he did!

We decided to take Ian home with us on his one-week birthday, and it was a lot of fun having him with us in our home. Since we were not prepared that he would survive this long, we had not bought anything baby-wise like a baby bed, a car seat, etc. The nurses sent him home wrapped up in a little "Moses" wicker basket, and the first night he was home, Toby pushed the couch cushions and a single mattress on the living room floor and we all had a slumber party in front of the fireplace and slept there all night. He lived for two days after we brought him home and died in his sleep on December 07, in the morning. He was so sweet and was smiling.

As hard as it was to let him go, we found great peace and strength in the Lord that Ian had returned back to Heaven and had been completely healed. We knew God had a plan for the three of us and Ian had completed whatever it was he was sent here to do. We miss him terribly, but feel so honored to have known him and held him and loved him for 9 short days! We can rejoice that we will one day be reunited with him in Heaven and can all be a family again! God gave Toby and I grace to survive this ordeal and that’s why we chose the name Ian, which means "God’s grace".

So now, where do we go from here? Well, Ian was buried in the cemetery on our road, about 1/4 mile from our house, and I have been inspired to write a book about his life, our situation, and how God carried us through it all. Toby is working on a web page about Ian and anencephaly, and we are trying to tell our testimony to others so they might know the peace and joy God can bring—even under the worst of instances. We took 14 rolls of film in 9 days—that’s 395 pictures!

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