From the moment you find out that you’re growing a tiny little human inside of you, thousands of thoughts begin streaming through your head, all centered around this thing called “pregnancy.”
“What will my baby look like? Will he play football? Will she be a cheerleader? Will they be on the honor roll at school, forcing me to have one of those tacky bumper stickers on the back of my car?”
You begin to visualize this little creature inside of you and all the endless possibilities for their future. The teachers lovingly doting on your little one, telling you what a joy they are to have in class. The girls/boys fawning all over them, your child having an endless line of suitors to choose from. You smile as the thought of an elderly couple telling you what good manners your little one has, flits across your mind. Thinking about your baby’s future almost always sends you to your “happy place.”
No one ever thinks that something could be wrong.
At the ever important anatomy scan (done when my daughter Abbi Mae was at 21 weeks gestation), the radiology report stated that she had what was called a Two-Vessel Umbilical Cord, and that it was suspected that she also had Right Renal Agenesis, meaning that her right kidney was missing entirely. After some harsh words with my OBs office (he was sent the radiology report the day I had it done but didn’t even bother to READ it until I came in for a cold almost 2 weeks later), I was able to get in to see the high risk provider to have a high resolution ultrasound done.
The office staff at the Maternal-Fetal Medicine (Maternal-Fetal Medicine doctors are often referred to as an MFM) clinic I was being seen in was apples to oranges from the staff in Dr Lobaugh’s office. These ladies were genuinely kind and very understanding of the stress I had been under in the time since I found out that I may have a troubled pregnancy. I signed in and waited to be called back. Mom was able to come with me, so we chatted quietly while we waited. After about 20 minutes they called my name and back we went.
The room we went into was a very pleasant one with dim lighting, a comfy chair for Mom, and the ultrasound machine next to the bed in the center. The sonographer came in shortly afterwards and got started. She walked us through the pictures of the baby (more for Mom than me, since I already had an idea of what I was looking at) and then started taking measurements. She informed us that since babies with a Two-Vessel Cord can occasionally have troubles with their hearts, she would also be doing an echocardiogram (Echo) on Abbi as well. Her heartbeat had been perfect up to this point and the anatomy scan didn’t pick up any abnormalities, so I was all for it and not concerned. I settled in for the long haul (she said the scan could take up to an hour), and tried to relax as much as I could. She finished up, gave me some baby wipes to clean the gel off my belly and went to show her report to the doctor. Mom and I sat there for what seemed like an eternity, but in reality was only about 20 minutes.
The doctor walked in and introduced herself as Dr DeStefano, shaking both mine and Mom’s hands. She began by confirming the information we had about the Two-Vessel Cord and then tells us that her right kidney IS there, but it is very small, multicystic (filled with lots of little cysts), and not functional. It looks as though it began forming along with the left kidney, but for some reason it stopped early on in its development. But so long as the lefty continues to work well, Abbi will be able to live a long and healthy life with only one kidney.
She tells us that due to the cord issue we were facing, Abbi also has what is called Intrauterine Growth Restriction (I’ve also heard it called Growth Retardation, but I like the word “Restriction” better), or IUGR. Babies receive a diagnosis of IUGR when they are at the 10th percentile or lower for growth for their gestational age, meaning that they are smaller than 90% of babies in the same gestational week of development. I had known since the anatomy scan that Abbi was on the small side; along with the information regarding her cord and kidney, the radiology report also stated that she was in the 15th percentile for growth at that point. When I mentioned this to the doc, she told us that while Little Miss is definitely small for her gestational age (referred to as SGA), measurements taken prior to 24 weeks gestation were not as reliable as those taken after that point. After reviewing the measurements taken that day at the MFM’s office, she tells us that my little girl is now in the 5th percentile (weighing in at only 1 lb 4 oz), classifying her IUGR as “severe”.
You can learn more about IUGR here from the Stanford Children’s Health website.
I was beginning to feel a glimmer of hope that Abbi Mae might actually be OK for the first time since I read the radiology report a week or so before! Dr DeStefano continued on, giving us more information obtained from the scan. Baby’s brain looked good, she was proportional, and she was moving well. She then proceeded to give us the information from the Echo that was done of Abbi’s heart.
That was the moment mine stopped beating.
She tells us that my daughter has a congenital heart condition (congenital meaning it’s something you’re born with) called Tetrology of Fallot (pronounced Fal-Oh), commonly referred to on paper as ToF. In layman’s terms, ToF is a combination of not one, not two, but four heart defects that are present at the birth of the child. ToF causes oxygenated blood to mix with non-oxygenated blood; babies born with ToF, often called Tet babies, can have a bluish tint to their skin. Ever heard of the “blue baby?” Those are Tet babies.
Click here to read what the Mayo Clinic has to say about Tetrology of Fallot.
Dr DeStefano goes on to tell me that there IS good news. ToF is easily repaired, although it will require open heart surgery to do.
The doctor starts giving more more information about Abbi’s condition, how it’s repaired, and tells me that the prognosis was very good for a full recovery. I didn’t absorb any of it. I mean I heard her, but absolutely none of what she said was sinking in. I was in shock. Before we went in for today’s appointment, I knew that we were looking at a small baby who had a Two-Vessel Cord, and that we’d quite possibly be facing renal issues due to the fact that she only had one functioning kidney. I had no idea whatsoever that there was even the SLIGHTEST chance that there could be something wrong with her heart. And I sure as hell never suspected that the something wrong with her heart would require open heart surgery! Just the thought that they’ll have to crack open my teeny weeny baby’s chest literally made me nauseous.
Recognizing that I wasn’t absorbing any of the information the doc was giving me, I vaguely remember asking her to write down the name of the condition so I could research it more on my own (after the shock of the news had worn off). She informed me that my original due date of December 6th was, as far as she was concerned, no longer relevant; she would not let me carry Abbi past 37 weeks due to her growth restriction. The doc also said that I should most likely plan for a C-Section, as to avoid stressing baby’s heart at all. I had been planning to attempt a natural birth this time…
I sat there in the MFM’s office with what must’ve been the most retarded, slack-jawed look on my face that they’d ever seen. This must be a dream. That’s what this is. It’s one of those ultra realistic weird ass preggo dreams that leave you questioning what’s real and what’s not when you wake up. Any minute I’m going to wake up and be in my amazingly comfortable, pillow topped king sized bed, with my toddler beating on the wall for me to come let him out of his room.
Once I wake up, this will all have been just a terrible nightmare. (Hopefully this will be one of those bad dreams that you barely remember longer than five minutes.)
Just gotta wake up…
Any minute now.
But it wasn’t a dream. It was real. I was sitting in a real doctor’s office, looking at a real doctor (a pretty one, I might add), who was telling me that my daughter had some real health concerns. This would not be a dream that I would barely remember for more than a few minutes after waking up. This would undoubtedly be a time in my life that I would never forget, remembering every detail with painstaking clarity. After all of the information had been put out, Dr DeStefano asked me if I had any final questions before we left. I had just one.
“Should I send a Red Cross message to my husband’s unit to try to get him sent home from Afghanistan?”
Her answer surprised me in it’s simplicity, given the complexity of the bomb she had just dropped on me.
She explained that while she didn’t anticipate needing to deliver anytime within the next month or so, given all of the complications we were now facing (her small size due to such severe IUGR being the most immediately problematic), we could theoretically deliver at ANY time if her growth in utero seems to have halted. Toss in the fact that I’d almost assuredly be delivering via C-Section and have a 38 pound three year old at home, I was going to need Matthew’s help since Abbi will most likely be spending at least some time in the Neonatal Intensive Care Unit (NICU).
Our plan of action from here on out was pretty simple. I will be followed by a regular ol OB (you can be sure that I will NOT be seeing Dr Lobaugh) for anything Mommy related. As far as baby is concerned, I will be seen every week in the MFM office. I will be getting a biophysical profile (an ultrasound where they will measure blood flow to baby’s brain, kidney, cord, heart, and will be checking to see if she is moving enough and is practicing her breathing) on a weekly basis, and will be getting a growth scan every other week, which includes everything in the biophysical profile, but also measures her growth.
Armed with more information than I’d ever hoped to get at this appointment, Mom and I gather our things, schedule my scan for next week and head to the car. I set about the task of calling family/friends to give them the news (I gave most of them the Cliff Notes version) and started delving into the depths of the Internet after I put the Tiny Tyrant in bed, learning everything I could about ToF. I called the Red Cross and filed an official message to be sent to the hubby’s chain of command (he couldn’t be sent home without the Red Cross message), and got ready for bed. There was nothing more I could do.
Now we wait.