Ella’s pregnancy and birth story: Our journey through a sacrococcygeal teratoma diagnosis.

It’s been quite a while since I last blogged -I promise to work on that!- and it has also been quite a year. I last posted about Adrian becoming a big brother and have finally gotten around to putting our journey into words.

Ella’s pregnancy started off pretty textbook. I remember being extra thankful that I hadn’t been experiencing the very heavy nausea I did with my son, Adrian. It had been 5 years since his birth, and I was preparing for all of the activities and one-on-one time baby and I would have now that big brother was in school. However, nothing could have prepared me for the shock we received at our anatomy scan.

It began just as I had remembered the last one did. The tech was taking measurements and listening to the heartbeat. She told us we were having a little girl and excitement filled the room! Adrian had been praying for a baby sister specifically for about a year prior, and we couldn’t wait to tell him his prayer had come true. Unfortunately, that joy was short lived, as moments later she informed us she needed to check on something with the perinatologist and they would both be back in a few minutes. Alex said what I was thinking but didn’t want to speak; “something’s wrong.” I had never even met the perinatologist during my previous pregnancy. Typically, a tech would scan for what they needed, and we walk out with pictures of our precious baby about 15 minutes later. After what seemed like an eternity, the doctor came in and took the sonographers spot. As he examined our baby, he asked us to look on the screen at a very small bump on her tailbone. That was the moment we found out our daughter had a sacrococcygeal teratoma, also known as an SCT. An SCT is a mass that develops at the base of the babies’ tailbone. The sonographer told us that in her 15 years at that office, she had never personally seen one, as they are present in only 1 in 35,000-40,000 births. In complete shock and disbelief, we were handed an internet print out and referred to a fetal specialist/surgeon at Jackson Memorial Hospital in Miami, Fl.

You know when they say not to google things? Well, they were right. I never realized how good of advice that was, until I googled a sacrococcygeal teratoma. The images were terrifying, and it seems for every one survival story I found, there were three more of babies who didn’t make it.

Upon meeting with the fetal therapy team at Jackson, we were told this is not a genetic condition -both lucky and unlucky I thought- and given the statistics. Her viability rate was 50%, with only 15% of babies diagnosed at 19 weeks making it to term. That meant there was a 50/50 chance she would survive at all. Their leading hypothesis is that these babies may start off as twins, and something doesn’t go right in the very early weeks. We then learned of the many challenges she faced depending on how aggressive the teratoma was, as well as if it remained external or began to grow internally. We were told that if our baby survived, urological issues would be very likely as this is the most common side effect children born with SCT’s face, and we would be referred to a pediatric urologist during pregnancy. The doctor also briefed us on the possibilities of neurological roadblocks depending on how early she needed to arrive. We were spoken to about the possibility of the tumor growing into the spine, which would result in issues with walking. As well as the dangers of maternal mirror syndrome that, I could experience if the baby began to develop hydrops. Lastly, we were informed if that we were within our timeframe for termination if we chose to do so. Despite the poor statistics, the run down of risks, and the medical terminology I didn’t yet understand, THIS was the moment it dawned on me how very serious this all was. A medical professional that has dedicated his whole life’s work to developing life saving techniques for babies in utero, had just offered us termination as an option.

Even though it wasn’t a choice in my heart, it’s so easy to say what you would and wouldn’t do until you’re in that position, and I could never judge anyone that didn’t make the same decision we did. We were faced with the very real possibility of having a child that if she did survive, was facing a long list of possible life long health issues. Was that fair to her? Would it be fair to our son? Luckily, we were blessed with both faith and strong support system of family and friends, as well as a medical community we were confident in. They stood behind our decision to continue 100% and prayed for us daily. I remember having a strong feeling back then of our daughter’s life having a purpose. Whether she was with us for a few months in utero or she made it to birth and beyond. any disability she faced wouldn’t make me love her any less than I already did. There was a reason she was sent to us, even if I didn’t understand it at the moment.

Upon our decision to continue on with Ella’s pregnancy, I started a weekly routine of getting level two scans at the hospital. I additionally had a fetal echocardiogram performed as well as a fetal MRI. We were also given a tour of the nicu and a set of date “goals.” For example, at 24 weeks they considered most babies viable, and otherwise healthy preemies born at 28 weeks, had a 100% survival rate. The big goal our doctor wanted us to aim for was 34 weeks; although there was nothing we could really do to keep her in longer other than keep a close eye on her through our weekly monitoring. Our specialist explained that at 34 weeks the risk of neurological issues drops significantly and they would determine if it was less risky to keep her in or deliver at that point.

Once a week from our initial meeting on, I would drop our son of at school and head down to the hospital. Praying and hoping it wouldn’t be the week where they saw something they didn’t like, and decided it was time for her to come out. Luckily, her tumor’s growth remained steady but slow. In the last 3 weeks it barely seemed to grow at all. Her MRI showed there to be a small internal component, which was pushing on her bladder, but thankfully no growth into the spinal cord. We wouldn’t know until birth if she would need a resection or if her bladder would be affected, but the pediatric urologist was on standby if she did need a surgical correction. Against many odds, Ella Love, was born at 38.5 weeks and needed no immediate intervention. Her tumor ended up measuring around 10.5×10.5 centimeters, and was mostly cystic in nature. Her tumor also looked nothing like what we had googled –hence why google is not your friend! It was almost like an inflated pancake on one of her little butt cheeks, not obstructing her bowels, and not discolored as I had expected. To me she was the most beautiful girl I had ever met. She was ours, and to us she was perfect.

Thirty hours following her birth, Ella went into surgery to remove her tumor and coccyx bone. In surgeries where the coccyx is removed, there is a significant reduction in the recurrence rates. It took about 4 hours, and the surgeon was confident he had removed everything completely. Thankfully, her tumor was benign! When we saw her in the NICU for the first time following her surgery, she was so quiet and cozy. The only baby that was laying on her tummy due to her incision. The next day, I was discharged and it was one of the absolute hardest things I have ever had to do. My heart truly goes out to every mom that has had to leave their baby behind for any amount of time.

We had been prepped for a 2 week+ stay, but in Ella fashion, she defied odds yet again and was discharged in time for Mothers Day. She only stayed a little over a week. The joy of walking out of those heavily secured doors of the NICU with our baby was inexplicable! Baby girl was coming home where she belonged.

We returned to the hospital a few days following to check her alpha fetoprotein levels, and continue to check them until this very day. This tiny baby with the bleak outlook is now a laughing, loving, walking, babbling, one year old JOY! The lessons she has taught me have forever molded me as a person. She has shown me that the best things in life are worth fighting for, and odds are just that… odds. They’re not a guarantee and they’re not a promise.

I share Ella’s story with you all to in the hopes of spreading awareness to this type of tumor, on which not much is yet known. If you are running across this blog after receiving this diagnosis, know that there can be a positive outcome to your story as well. We still have a few years before we get the “all clear” so her surgical team will continue to monitor her on a bi-yearly basis. If you’d like to reach out feel free to email me through the contact form on this site. I’ll leave you with a few pictures of Ella in her very first days below.

 

DSC_1898
DSC_2160

EllaLoveNewborn-104
*Special thanks to my friend Melissa, of Melissa Ashley Photography, for the last picture of Ella.

Facebook Share|Tweet Post|Email Post|Contact Me|Pin Post
October 9, 2015 - 6:32 pm

Lea Anne Smith - Beautiful story! Thank you for sharing. From mom of Megan, SCT survivor. :)

October 9, 2015 - 8:19 pm

Resa Wagner-Pittman - Thanks for sharing. My SCT survivior just turned 7 and only has a a few issues with flexibility.

Babies who make it past 30 weeks, usually have a very good outcome if they can make it through the initial removal. Anything that comes after that or as a result of that, is manageable. Many have no issue afterward at all, some have on-going issues. While termination often is an option, it is also an option offered by people who do not necessarily understand the complexities of getting that diagnosis and what the options for treatment after birth are.

I would encourage anyone who gets a diagnosis like this, or any diagnosis that is a rare birth defect, to seek out hospitals that have a lot of expertise in the congenital birth defect in question. Also seek out parental support groups and discuss with other parents. Facebook usually has a support group of some kind, for probably every birth defect known, and that support can mean the difference between keeping your child and deciding not to. For Sacrococcygeal information, the top hospitals in the US are Children’s Hospital of Philidelphia and University of California San Fransisco.

Denver also has a Children’s Hospital with a experience in SCT treatment and removal as well as most large cities. Our family is from Montana, and we went to Atlanta for treatment at Children’s Hospital of Atlanta, Egleston. We went there becuase we had family there we could stay with.

Personally, I found google to not have enough info….but that was 7 years ago, and I am sure it’s changed.

October 11, 2015 - 1:38 am

Graciela Maestas - LOVE, HOPE & FAITH