I shall not die, but live, and declare the works of the LORD.
Psalm 118:17
Elijah Yusef Mueller's Birth Story

Elijah at about 3 hours old top left, 3 months at top right

What started as an easy pregnancy changed for us at around 8:30 in the morning, December 10, 2001. Each pregnancy had gotten progressively easier. I had Alexander in a hospital, unmedicated, Dominic at a birthing center with Nancy Spencer, our midwife, as I had promised myself never to have a baby in a hospital again, unless I had an emergency. We fully expected this child to arrive on our doorstep on the way to the birth center, and we didn't mind, as we knew we could do it alone.

That Monday, though, Rich and I had taken the boys with us to see the "baby television." We had been preparing them for seeing pictures of their new baby brother or sister for a few weeks. In the examining room with Dr. Maslow, who also did the ultrasound of Dominic, Rich explained all the pictures to Alexander and Dominic as we saw our third baby for the first time. Dr. Maslow is Nancy's backup doctor, a perinatologist who is a great supporter of midwifery, and in whom Nancy had never failing confidence.

Being veterans to ultrasounds and new babies, Rich and I were somewhat blase about this, we knew the routine. We were happy to see our baby's brain, spinal column, lungs, heart beating, stomach, bladder, kidneys, umbilical cord, all in working order, just as we expected. I expected that this baby would be a boy, too, but we decided to find out anyway. Dr. Maslow spent a lot of time in the pelvic area, even after announcing that we were having a boy. Rich leaned over to tell me that he thought that maybe Dr. Maslow had been wrong, and was double checking, maybe we were having a girl after all. I knew that wasn't it, though, as I had identified the correct parts long before he had said anything about gender. Then, the words we never expected came.

"There's something wrong here we need to talk about."

I burst into tears somewhere in between hearing these words and hearing what was wrong. Our son Elijah, had what was called a Sacrococcygeal Teratoma. Fancy words for a non-cancerous tumor originating at his sacrum, the end of his tailbone. At this point, it was already the size of his head (around walnut to egg size at that ultrasound), and these tumors grew at a rapid rate, about the same rate as the growing baby.

I'm sure Dr. Maslow thought he had a hysterical woman on his hands, but he was kind and gentle as always, and answered our questions and tried to calm our fears while giving us the information we needed. He also tried to hide the worst case scenario photographs in the medical book from me while looking up more information. I'm glad I saw them, though, because I knew our case would be better than those.

I pulled myself together and asked the questions I had: What did this mean for our baby, for me, this delivery? We found that I would have to deliver via caesarian, and Elijah would have to have surgery immediately after birth. Rich asked if this surgery could be done in utero, but the answer was no. This was a vascular tumor, and our major concern that had to be monitored was that he was at risk for fetal anemia or heart failure, as he was basically pumping blood for two people. There were two ways this tumor could present, and we were fortunate that we got the lesser of the two options. Elijah's tumor was cystic, rather than fleshy, which meant that there were fewer blood vessels going through the tumor, and the surgery wouldn't be as complex as it could be. Also, his tumor was primarily external, so it wasn't interfering with his organ development, and would be relatively easy to remove. There was no way to have Nancy deliver, as the tumor could rupture during contractions, sending him into heart failure, and even if it made it through labor, would not have fit the birth canal. Dr. Maslow, though, saw no problem in my continuing prenatal care and visits with Nancy, along with seeing him every three weeks for ultrasounds.

This condition carried a risk for pre-term labor as well. However, until about 32 weeks, I had no real restrictions on my activity, other than to take it easier than normal during pregnancy. I was specifically told not to vacuum, and to be a little more serious about the lifting restrictions on pregnant women. After 32 weeks, I was told not to do anything but rest, take care of myself and our older boys. I got a lot of my knitting done in that time. Once we got over the initial shock, it wasn't that hard to deal with the reality of our son's diagnosis. God gave us a calmness through most of this that we desperately needed.

From the beginning, we had our friends and family praying. We asked them to pray for our son, for us, for our doctor and midwife, the pediatric surgeon and for the hospital staff. We asked God for a complete healing, but we didn't know how that would come, whether through a miraculous sign, or through the doctors' hands. We left ourselves open to His will, though, and His faithfulness calmed our fears and gave us hope. What came to us, was a greater spirit of thanksgiving and prayerfulness. We hope that this was left with those we asked to pray as well.

At around 30 weeks, Dr. Maslow seemed a little more concerned with the growth rate, and had me get steroid shots to strengthen Elijah's lungs, should we have to do the c-section prior to term. We also met with the pediatric surgeon around this time. Dr. Chappell was one of three doctors who might do the surgery, and he explained to us that these cells were basically one step above stem cells. The tumor was made up of cells that hadn't been given a job during differentiation, so they kept growing and multiplying. This made the tumor appear malignant, although it was more likely benign. He told us that an abnormality requiring surgery occurred in about 4% of pregnancies, and that this particular abnormality occurred in about 1:40,000 pregnancies.

Nancy was so wonderful through this. She had cared for me and Dominic so well, and prayed us through that pregnancy, and she continued to care and pray for us through this pregnancy, as well. She did the homework and information seeking that we needed, worked with Dr. Maslow and accompanied us to the hospital to be a support during my surgery. She called a pediatric geneticist to make sure that this wasn't a result of a genetic predisposition, we found that there was no reason to think so, and that there was no reason to be concerned that his children would be at greater risk for this kind of tumor.

Dr. Maslow found three smaller cysts under Elijah's sacrum and started to talk about moving the delivery date from the last part of March to the middle of March (the due date was April 4), and we started to be a little more nervous. However, at our final ultrasound, Elijah was measuring large enough, and looked well enough not to move the date up and we decided on March 25th at 8:00 am.

We entered the hospital at around 6:00 am. After going through the rigmarole of forms and medical history, Dr. Maslow came and talked to me to see how I was and Nancy was there a little later to come support us. Rich got his paper clothes on while they prepped me for surgery, he said that he and Nancy were able to have a great talk about just about everything while they waited to be admitted to the O.R. We had such an amazing staff doing my surgery, there was my doctor, a second surgeon, the anesthesiologist, two wonderful nurses and a nursing student. They were all capable and caring and did absolutely everything to take care of me and reassure me.

The only really frightening part of this was getting the anesthesia. I was given a local to get the spinal block in and duramorph for pain and to cut the edge when I was in post-op. For some reason, the local only took directly in the area of the first shot. When the anesthesiologist was pushing with his thumb to find the right spot to put the spinal block in, it would send shooting pain down my spinal column and through my left leg. I had fears of only half of me being anesthetized, or feeling the surgery, and it caused me so much pain that he suggested we could go to a general if I wanted. I wanted to avoid that at all costs, so I told him to try again. Apparently, my vertebrae are packed really tightly close together, and he was having a hard time finding the right spot, but he went a little lower with the local, did a second shot, and it took. I got the spinal block, and went numb just about immediately. It was very strange - disturbing - not to feel anything from my mid-back down. I couldn't move my toes, any of my muscles, it was the worst part, really, feeling so out of control of my body. They had Rich wait outside while they did the anesthesia, so he didn't have to see the huge needles in my back. The nurse who was holding me while they did this was so great, and the student nurse asked if I were any particular religion, so when I answered her yes and Christian, she offered to pray with me before the surgery. They were all so comforting to me.

Unfortunately, along with the numbing and pain relief, I became violently ill. I was hot and dizzy, and had stomach cramps, but I didn't even register this as nausea, I was just thinking this was how I reacted to anesthesia and was worried I'd feel that way until it wore off. So, when I threw up so violently, it came as a surprise to everyone. Rich was fortunate to miss the first three times I was sick. Everything went really quickly once they got the spinal block in, they changed my clothes right away, Rich was admitted in with Nancy, Dr. Maslow had her stand to take the pictures pretty much right next to him. Rich said they already had cut down to my muscle as he was walking in the door. I'd say it was a matter of five minutes between administering the anesthesia and getting to my uterus. It took a total of about 40 minutes to get from the first incision to my last stitch.

Rich did get to look at parts of the surgery and he said it was amazing how quick and easy it seemed to go. I only have two external stitches. Dr. Maslow sewed almost all of it up on the subdermal level, then used glue and tape for the outer parts, with two stitches on the ends. It was amazingly neat and, with time, will lay flat.

Elijah Yusef was born at 8:39 am. He was screaming as soon as his head was out, he was just as feisty and strong as my other babies. His coloring is between Alexander and Dominic, he had more hair at birth than Dominic, but less than Alexander. Because the tumor was much larger than anyone thought, I will never be able to have a baby vaginally. He was able to do a bikini cut to get in, but he had to T up my uterus to get the tumor out. Even though we don't plan to have any more children birthed to us, this is a pretty big disappointment for me, but we did what we had to for Elijah. I know that my doctor did what he could to avoid it.

With the tumor, Elijah was 9 lb. 15 oz, 18 1/2 inches long. The tumor looked and felt like a large hot water bottle, or water balloon. The skin was very thin, but it worked out, because the surgeon had more to work with when she patched him up.

In the ultrasound, it looked like the tumor was about the size of his head, but it ended up being about the size of his torso. It kind of had two lobes, though it was one piece with fluid flowing through all of it. My guess is that because of the nature of ultrasound, the cross section we saw cut perpendicular to the tumor, so we saw it cross wise rather than length wise. Elijah's weight post surgery was 8 lb., though he still had a lot of extra fluids in him from the surgery, so our estimate was that he was around 7 lb. 8 oz to 7 lb. 12 oz when all was said and done.

His surgery was Tuesday morning, and went quickly, he entered the operating room around 9:15 am, and he was out of post-op by 1:30 pm. Dr. Chappell wasn't able to do the surgery, but Dr. Malo and Dr. Holland did it instead. Dr. Malo was so thorough, she spent a good 40 minutes just making sure she had every single part of the tumor out of him before sewing him up. We were really pleased with her precision and care, both during and after the surgery. The nurses attending the surgery called us every 45 minutes to update us on what was happening. They put him on a ventilator afterward as a precaution, but he was lifting his head and shaking it, trying to pull it out, so they took it out that night.

He had so many catheters, monitors, PIC lines, IVs (he had an adult IV sutured into his jugular, in case they had to give him lots of blood in a hurry - they never had to use it) and drains on him that I was only able to hold him once before the surgery, and we weren't able to hold him again until the Thursday following the surgery. This was really hard on us, because we never even considered the possibility that we wouldn't hold him. You always hear about preemies and such being held in the NICU, so it just didn't cross our minds. Even though I was holding him through a blanket and with a pillow on my lap, when I did get to hold him again, it was so good to have him near me. Each day following the surgery, they took one or two more things out of him, until all he had in was the IV for his medication and feeding. He didn't get to eat until Easter, but they had me pumping from the moment I was in recovery until after he was able to nurse. They had the colostrum and milk in the freezer for feeding him when I wasn't there, since I was released from the hospital five days before he was.

Once he was nursing, his recovery went very quickly. I think the only reason they kept him in at all after he was able to nurse was to make sure he was doing it efficiently, so they could send him home knowing he could eat. They allowed us to stay in a courtesy room, so we could be with him while I was establishing nursing with him. He was weaned off the IV and the morphine, and by Monday morning, the 1st of April, he was not on morphine anymore, but on Tylenol, and the IV was taken out. He was sent from the NICU to the Intermediate Care Nursery that morning, and by the afternoon was doing so well that they let him room in with me. Tuesday, we were told that he was well enough to come home with us. So, Elijah came home to his rowdy brothers Tuesday night, April 2.

We were truly blessed with wonderful doctors, nurses and hospital staff. We were treated with such care, respect and dignity, and our son was also. He was never left to be in pain, nor neglected for a moment. Every doctor came to check on me, including the anesthesiologist.

It was touching to find that even people we hardly knew were willing to care for our boys, clean our home and bring us meals. This was on top of the amazing work that our friends and family had done. This experience opened our eyes to the loving community we have here. God has been so faithful, and provided hands to do His work in our lives.

From here on out, the only difference in Elijah's life is that he will have blood tests every three months this year, every six months next year and annually as long as the doctors think there might be a risk of regrowth. The scar runs all across his bottom, but nobody but us, doctors and his wife will ever really see it, so it's no big deal. It looks huge now, but as he grows, it will be smaller, of course. All of his stitches are out, and unless you change his diaper, you can't tell anything was there at all. He doesn't have any pain, and he has no idea what he's been through.

We are thankful to all of you who prayed and cared for us, and especially to Nancy, Dr. Maslow, Dr. Malo and the staff at the hospital. Without their vigilance and skill, we never would have caught this, and we would have lost our son. Bless you all!