An SCT Pregnancy

Ivana and I have been married for 14 years and are the parents of two beautiful daughters, Gabriella (7) and Rafaella (3). On November 13, 2003 we met at the perinatologist's office for an ultrasound at 17 weeks gestation. This was our third pregnancy and we were very excited that morning to learn the gender of our little budding life. Ivana was considered "high risk" and was seeing a perinatologist as a result of delivering Gabriella at 26 weeks gestation (severe preeclampsia). Rafaella was born full term, however, and we thought we had had our "difficult" pregnancy and were due some smooth sailing. We entered the ultrasound room and watched closely as the ultrasound technician scanned the anatomy of our child. Everything appeared to us to be there and normal. She then told us we were having a boy. Shortly thereafter (and with no hint of an abnormal
finding) she left the room to get the perinatologist (standard procedure).

I distinctly recall looking over at Ivana during this interlude and seeing a tear sliding slowly down her cheek as she lay on the examination chair. She then told me for the first time that she had always wanted to have a boy and was moved to tears at the
announcement. Our brief reverie was broken by the appearance of the perinatologist in the room. He quickly reviewed the anatomy and said," Everything looks pretty good but there is one thing I'm very concerned about." He then punched us in the gut with the news that our little boy that we had only known now for five minutes had a tumor with a name we had never heard of and could not even spell (sacrococcygeal teratoma). The tumor was approximately 3 x 4 x 4 cms at the time and appeared like a balloon floating behind the baby's butt. The doctor told us that "these babies generally do not do well." He told us Elijah had a 50% chance of survival (the identical phraseology the neonatologist employed with me minutes after Gabriella was delivered weighing 1 lb, 10 ozs). He proceeded to say "I'm sorry" multiple times. I felt like a death sentence had been pronounced on our impossibly tiny boy. Ivana asked the doctor what parents did in this situation. The doctor told us "terminate the pregnancy."

Without a doubt, the distance between "it's a boy" and "terminate the pregnancy" is the greatest gulf I have ever travelled. It was unthinkable that we decide ourselves to stop the beating of the little heart that had appeared so wondrously in our lives. We told the doctor that termination was not an option. I asked for literature discussing SCT's and he provided me with several articles including one with a picture of a particularly large SCT that had overwhelmed the poor expired baby to whom it was attached.

We left the office in a daze. The specialist who had been there for the birth of our two daughters was now suggesting to us that we terminate our baby boy's life before he drew his first breath. We knew we needed to pray and we needed a second opinion. The following week we saw another perinatologist. This doctor seemed more familiar with SCT's and informed us that the prognosis depends on the presentation. Elijah's SCT appeared to be external and had a significant cystic component. He recommended weekly sonograms and we
saw him for the next several weeks. During this time, the tumor was growing steadily. At our 20 week appointment, the doctor told us that the tumor was growing and we needed to give consideration to
terminating the pregnancy. After recovering from our shock and disappointment, we immediately told him that was out of the question.

After the initial diagnosis of Elijah's SCT, I found myself driven to return to the same medical libraries I had visited during Gabriella's 3 month stay in the NICU. I copied and studied every article I could get my hands on discussing SCT's. During this time, I saw that two institutions, Children's Hospital of Philadelphia
(CHOP) and University of California at San Francisco (UCSF), and two physicians, Dr. Adzick (CHOP) and Dr. Harrison (UCSF), appeared to have far and away the most significant clinical and surgical experience with SCT's (both in utero and neonatal). I was growing weary of talk of termination of pregnancy from physicians who
(understandably) did not have significant experience dealing with this rare tumor. We decided to travel from Orlando to Philadelphia to meet with Dr. Adzick and his team at CHOP.

On December 22, 2003 we walked across the street from our hotel to the Univ. of Pa Hospital for our 7 a.m. appointment for a fetal MRI. For the next two hours, they chased Elijah all over Ivana's
uterus as he fled from the apparently irritating vibrations effected by the MRI machinery. They told us it would be 45 minutes to an hour depending on how active the baby was. The MRI tech told us that
Elijah was moving in the uterus to the farthest point possible away from the belt strapped over the uterus. This was the first of many indications that Elijah was going to be a very active baby.

After wearing out the MRI staff, we were sent off to fetal ultrasound. We had a very caring and competent ultrasound tech scan the baby and then the radiologist came in and examined Ivana and baby.
She said the baby's SCT looked pretty good compared to many she had seen. She indicated that it was not unusual for her to have to tell people in our situation that the baby was not going to be able to
survive. She was happy that she did not have to deliver such grim news to us. She did, however, ask many questions about the prior classical (vertical) c-sections that Ivana had during two prior
deliveries. We would only learn the significance of this later in the day.

After the fetal ultrasound was completed, we had less than 1/2 hour to wolf down some lunch before our fetal echocardiogram appt. at 1 p.m. The fetal echo went well and we were told Elijah's heart looked normal.

We then met with a genetics counselor to provide family histories of birth defects or multiple births. Nothing except twins on my Mom's side.

Finally, around 3 p.m. we met with Dr. Adzick and an Ob/Gyn physician to review the data gathered that day (and forwarded immediately electronically to Dr. Adzick from various locations throughout the CHOP/Univ. of Pa. medical complex). We immediately liked Dr. Adzick. He speaks slowly and carefully measuring each word
for effect. He told us that the tumor was a type 1 teratoma having a significant cystic component. The solid component was not overly vascular. The size of the tumor was measured at 5.5 x 6.7 x 5.4 cms. He thought the baby had a good prognosis while making it clear that things could turn for the worse unexpectedly. Somewhat reminiscent of our Nov. 13 original diagnosis, he then proceeded to tell us that they had found something surprising and unexpected. He then turned the discussion over to the Ob/Gyn who told us that Ivana was
suspected to have a condition called placenta accreta (abnormal attachment of the placenta to the uterus). He thought it was likely caused by placenta attachment to an anterior area of the uterus where there was scar tissue from previous classical c-sections. He told us that this was a very serious condition that could cause Ivana to die from blood loss. According to the Ob/Gyn, pre-term contractions had to be avoided since those could cause rupture of the attached placenta blood vessels with attendant massive loss of blood and
possible death. He then proceeded to tell us that the accepted treatment for this condition is a hysterectomy. Dr. Adzick then explained that we were no longer a candidate for CHOP's open fetal surgery procedure since there is always pre-term contractions following such surgery.

Once again, we left a medical meeting in a daze. Talking with Ivana immediately afterwards, I realized how differently we had processed the same information. What I was focusing on was the fact that fetal surgery was no longer an option for our son. At 22 weeks, he was not viable and would not be viable for several more weeks. I could not imagine, however, a 24-26 weeker having to deal with a large teratoma and resection of same at the same time as the myriad other complications of prematurity. Ivana, on the other hand, was terrified of having to undergo a hysterectomy at 36 with all that
entails.

We caught an evening flight back to Orlando. Now we had to worry as much or more about Ivana than the baby. Since returning to Orlando, we have had 3 doctors (2 radiologists and a perinatologist) look at sonogram and MRI images of the placenta looking for evidence of the placenta accreta diagnosed in Philadelphia. No doctor here sees any evidence of placenta accreta. Thank God!

Without the possibility of open fetal surgery, we were left with nothing but prayer and faith from weeks 22 through 25. During that time period, the tumor (thank God) stopped growing.

During weeks 25 through 27 the tumor began growing again. During our appointment at 27 weeks on Tuesday January 20, 2004, the tumor had grown to 10 x 9 x 9 cms and appeared almost entirely solid with little or no cystic component previously present. The perinatologist told Ivana to be prepared to be admitted the following week. He planned on giving her steroids to facilitate fetal lung development. Given the aggressive growth and loss of cystic component, the doctor also felt it was necessary to see us every 3 to 4 days.

Ivana and I were very alarmed. Having spent 3 months in the NICU with Gabriella, we knew too well how stressful and painful that experience can be. We continued to pray (as we had from the start) for the shrinkage of this tumor. We returned to the perinatologist's office on Friday January 23, 2004. In answer to our prayers, the tumor had shrunk 30% down to 7 x 6 x 6 cms. It is important to note that for ten weeks we had been going for ultrasounds to the same room with the same (excellent) technician and the same equipment (Acuson). Also, when we returned on Friday, the baby was in the same position (head down) and the tumor was the same circular shape (only markedly smaller). Our perinatologist told us to "keep praying whatever we are praying" and withdrew the strategy of imminent hospital admission.

We had our 30 week ultrasound today, and Elijah continues to thrive and grow despite the tumor (currently measuring 8 x 7 x 7 cms.). He is measuring as a 32 weeker and is evidently well nourished. Having serial ultrasounds and MRI's, you "see" a little more of your baby than those having a pregnancy without
complications. Every medical person who has had to try to pin Elijah down for some medical test has commented on how active he is. Many times the doctor is unable to get a measurement of the ductus venosus
(for flow reversal) because the baby will not stand still long enough to administer the test. The doctor tells us this is a good thing and shows he is not currently under distress (cardiovascular or
otherwise) due to the SCT. I find myself asking Ivana daily whether Elijah is active and moving.

Despite what we have been through, we truly believe we are blessed. We have faith that Elijah will fight through this condition and will join his sisters who are so eager to hold him. Confronting
this SCT has led me to strengthen and deepen my faith and my relationship with Ivana. Ivana is the real hero here and seeing her walk in faith clothed with grace makes me want to marry her all over again.