An SCT delivery and surgery

Elijah Redmond Gibbons was born at 7:51 a.m. on March 11. I was sitting down next to Ivana's head and holding her tightly clenched hand as we listened for sounds through the opaque blue sheet hung at Ivana's mid chest level. The operating room was full of doctors (2 perinatologists, 2 pediatric surgeons, 1 anaesthesiologist, 1 neonatologist and several residents) and nurses.
Somebody said " You're going to have a baby soon." The next thing I remember was hearing the sweetest cry I will ever hear in my lifetime. I looked over at Ivana as the cries got louder and longer and she was weeping. Then I started crying and had to stand up to get a first glimpse of our son.

I had told myself not to look at the tumor and to focus on the rest of him. Unfortunately, the perinatologist had his head and the first thing I saw was the glistening red and pink tissue of the tumor. After a moment, Elijah was whisked over to the little table where he was cleaned and assessed. His cries got louder and more vigorous and began filling the operating room. Finally, I was told I could see him. I walked several steps over to the table and saw this beautiful rosy pink baby boy lying on the table. His lungs were expanding and contracting regularly and seemingly effortlessly. It became apparent to everyone that he was breathing room air! Since he was only 34 weeks and his amnio had shown immature lungs, his ability to breath without assistance was a welcome surprise.

Elijah weighed 6 lbs. 6 ozs (including SCT). He was 18 1/2 inches long. His APGAR score at 1 minute was 8 and at 5 minutes was 9.

After cleaning and assessment, Elijah was brought over to Ivana for a few precious seconds of bonding before transport down the hall to the NICU. Initially, I was not permitted to be with Elijah as he was subjected to further more invasive assessments at the NICU. After 45 minutes or so, I was permitted in to see him. He was lying on his back in an open warmer. At that time, he had no tubes or IV's in him. His tumor was dressed in sterile surgical gauze and concealed under a cloth. He was unable to straighten his legs because of the presence of the large tumor hanging down between his legs. He looked so peaceful and perfect as he lay there. It was so tempting to forget about the concealed mass and embrace the image of the pink healthy newborn apparently visible before me.

While I was gazing at him, a neonatologist came by with a large digital camera and asked me if I would consent to his photographing Elijah for medical study purposes. I consented and asked him to provide me with copies which he agreed to do. The doctor proceeded to take several photos of Elijah with the tumor dressed. He then undressed the tumor and took additional photos of the tumor. The tumor measured 16 x 10 x 10 cms. and appeared like a side of raw meat in the supermarket. There were several strands of perfectly intact skin hanging down over parts of the mass. It had apparently long since burst its skin sack and was presenting as primarily exposed and glistening tissue of varying shades of red and pink. There were isolated pockets yellow in color which were the cystic components of the tumor.

The tumor presentation was close to ideal for an SCT of this size. The pedicle was fairly narrow ( 2 1/2 to 3 inches) and it was located above the rectum (with no rectum displacement). An abdominal ultrasound confirmed that the tumor was external and all abdominal organs were intact and unaffected by the SCT.

Prior to delivery, the pediatric surgeons were estimating 2 to 5 days after delivery before performing the resection surgery.
After delivery, the surgeons quickly decided that the surgery would be performed the next day. The sheer volume of exposed tissue presented a significant risk for serious infection. That fact combined with the facts that Elijah was suffering from no respiratory distress and was otherwise stable led the surgeons to schedule Elijah for surgery on the morning of Friday March 12.

In preparation for the surgery, the nurse had to install a nasal gastric (NG) tube through his nose and into his stomach. The purpose of it was to drain out any excess fluid prior to the surgery. While she was battling him trying to install the NG tube, she suggested I insert a nearby pacifier in his mouth. I did so and watched raptly as he took it in his mouth, sucked vigorously and then held it in place with one hand (battling the nurse and the NG tube with the other).

I hated to see the NG tube go in because it was an ugly reminder of the surgery to come. I could no longer look at him and fantasize that he was a healthy little baby with no concerns in the world other than feeding and sleeping. Apparently, Elijah did not like the NG tube either. He kept pulling it out. By the morning of his surgery, the NG tube was gone and I was told that he had repeatedly pulled it out overnight. Since he had no fluid that needed to be drained, they decided to forego the NG tube.

Shortly before the surgery on Friday morning, they intubated Elijah so they could control his respiration while he was anaesthetized. Outside the OR, I met the anaesthesiologist. She explained that she would be providing Elijah with a narcotic anaesthesia. In her extensive experience, babies did better with narcotics than gas. The downside to the use of a narcotic was that it typically would take the baby longer to "wake up" and resume complete control over his own respiration. After that discussion, I was asked if I wanted to give Elijah a kiss. I told them I wanted to and I felt the warm soft skin of his abdomen on my lips. They then rolled him into the OR and I was left to pace the floor down the hall wondering whether that first kiss would be our last.

During Elijah's surgery, Ivana was up in her room trying to recover from her own major surgery. Friday morning prior to the surgery, she had asked me to take her down to the NICU so she could see her son before his major surgery. As soon as I wheeled her into the NICU she started feeling nauseous and had to leave. She was in incredible pain and the drugs were making her nauseous. After resting in another room for 15 minutes, she mustered the strength to see him for a minute before she had to leave the NICU again.

I wanted to be as close as possible to the OR on the third floor and so did not stay with Ivana in her room on the fifth floor.
Elijah was in surgery from 9:30 until noon on Friday March 12. I kept waiting to get an update or a status but I never got one for two hours. The waiting was agonizing. I kept watching the faces of people coming down from the area of the OR (actually a number of ORs). I kept trying to read their faces. Were they happy or serious, smiling or downcast? Nobody said anything to me and I was left to ponder all the imponderables. In between praying, I thought how unbearable it would be to lose him after seeing him resting so comfortably breathing room air the day before.

Finally, at 11:30 a.m., Ivana called me from her room. She had received a call from the OR that the tumor was off and they were in the final stages of the surgery. I felt an enormous weight slide off my back. Shortly after noon, the surgeons were in Ivana's room telling us about the surgery. Elijah had tolerated the surgery and anaesthesia well. They removed the entire tumor and coccyx bone.
The mass weighed approximately 1 and 1/2 pounds. They did not have to touch the rectum or any nerves surrounding the rectum. Elijah has a single horizontal scar about 3 inches in length. During the surgery, Elijah lost some blood. Doctors gave him 30 cc's of my direct donated blood.

As I write this, Elijah is still on the ventilator. Doctors felt it best to keep him heavily medicated for the first two days after the surgery to let the wound heal better and to lessen his discomfort. They expect to extubate him on Sunday. He is doing very well. He is breathing on his own over the ventilator. All his vital signs and labs are coming back in the normal range. Since the surgery, he has been placed on his stomach. His butt is plainly visible and the transformation is breathtaking. Looking at it now, it is hard to believe just yesterday he had this huge tumor projecting out of his backside. The surgeons did a wonderful job keeping the incision small and avoiding loss of muscle or non-tumor tissue in the affected area.