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
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
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
sailing. We entered the ultrasound room and watched closely as
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
I distinctly recall looking over at Ivana during this
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
always wanted to have a boy and was moved to tears at the
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
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
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
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
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
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
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.
could not imagine, however, a 24-26 weeker having to deal with
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
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
more of your baby than those having a pregnancy without
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