Amniocentesis

My amniocentesis appointment was scheduled for September 25, 2014 at 10 am. An amnio procedure is a needle inserted into the abdomen and 2-3 tablespoons of amniotic fluid is withdrawn. I was very nervous. Neither of us slept very well. As we enter the room we are greeted by the friendly ladies at St. Vincent. Our Genetic Counselor, Erica, and our ultrasound tech, Kathy. Both can tell that I am nervous and are assuring me that everything will be fine. So I sit back in the chair and Kathy checks the baby on the ultrasound. Heartbeat is good, everything looks fine. Dr. Harold Bivins comes in and shakes Joshua's hand and asks if I'm ready. I try to smile and he pats my arm and says everything will be fine. Kathy uses the ultrasound so Dr. Bivins knows where Baby is the entire time. They lay the chair all the way back and tilt it so my feet are higher than my head. Then they clean my belly and start opening packages. I close my eyes, take deep breaths and try to relax. Dr. Bivins tells me that first I will feel a prick, like giving blood. Then a pinch, then a cramp. It is NOT fun. In fact, it hurt pretty bad. Okay I have given birth twice. An amnio is not the cry-out-in-pain sort but it's definitely more than a discomfort! Joshua watches the whole thing. He watches Dr. Bivins insert the needle into my belly, watches the screen to see our baby, and watches the needle fill with amniotic fluid. It is a clear, yellowish color. It is relatively quick (but felt like an eternity for me) and I had a lot of emotions running through me. I was still in pain (I mean come on, there's a hole in me now!) and I was feeling just very emotional overall. Dr. Bivins tells me I did great and their sample is perfect. They sat me up in the chair before I could ask to just lay there for a while. BIG MISTAKE!! Kathy is talking a lot, I don't remember what she was saying because I started to get really hot. I felt pressure in my neck and shoulders. I look over at Joshua and say "I am going to pass out" Kathy doesn't hear me so I interrupt her and say "Can you lean me back a little please?" She leans the chair back a teensy bit. I still feel horrible! Erica asks if I want a Sprite and I say yes please. I ask her to put the chair back more and Kathy says "Are you sure you want it back, or do you wanna sit up?" And I said "LEAN. ME. BACK!" My head gets heavy, and I am so so hot. I don't know what happens next. I passed out and had a seizure.
For me it was like this: I feel hot but cold, so cold I am shivering. I can't stop shivering and my eyes are fluttering like crazy. I try to squeeze them shut but they still flutter and I am still shaking! I can hear talking. I hear them say I had a seizure and Dr. Bivins comes in and tells them to roll me on my side. I am awake now so I reach for Joshua who is up and right by me. I grab his shirt and sob. Everyone in the room has a hand on me, rubbing me, getting me cool towels. I HATE SEIZING. It is the worst!! Poor Joshua. I can't imagine how scary it is to see me do that. He said he was worried I would bite my tongue because it was sticking out a little bit. Later Joshua said it didn't look as bad as it felt. I didn't convulse violently, just shook a little bit. And my eyes weren't fluttering but they were rolled back. And my jaw was locked with my tongue poking out. :(
I rested on the bed for a while and talked to Joshua until I felt a little better. We get a wheelchair and they take me to the car. On the way home I still felt hot and dizzy. That was a very long hour and fifteen minute drive! I was so happy to be home! I rested all day thanks to my amazing sister Glory!  

Fetal Surgery Research

In the next few days we research fetal surgery. It seems our best option. I mean if you think about it, nerves are being damaged because they are exposed to amniotic fluid. Wouldn't you want to stop that as soon as possible? It definitely seems the most logical choice to us.
 

"Thirty years ago, the first human fetal surgery was performed at the University of California, San Francisco (UCSF). Now, a randomized controlled trial has proven definitively that fetal surgery can help certain patients before birth. Babies who undergo an operation to repair the birth defect spina bifida while still in the womb develop better and experience fewer neurologic complications than babies who have corrective surgery after birth, according to findings from a major multicenter trial led by UCSF researchers. The study is the first to systematically evaluate the best treatment for myelomeningocele, the most serious form of spina bifida, in which the bones of the spine do not fully form. The eight-year trial, which was stopped early because results were so positive, shows that prenatal surgery greatly reduces the need to divert fluid away from the brain; improves mental development and motor function; and increases the likelihood that a child will one day walk unassisted. This is the first time a randomized clinical trial has clearly demonstrated that surgery before birth can improve the outcome for patients."

But there are many tests to do and we have to meet criteria to "qualify" for the surgery. Since I am going on 21 weeks we need to get this going ASAP. The time frame window closes at 26 weeks! So we decided we want to go to Cincinnati Children's Hospital. The Fetal Center is one of only three fetal surgery centers in the United States with the expertise to perform the full range of fetal surgical interventions, including open fetal surgery. They have performed more than 1,459 fetal surgical procedures. It is also the closest to our house and will be easier for people to visit. You can see it by going to the Fetal Care Center at www.cincinnatichildrens.org. After deciding, we called our genetic counselor and had her send over all my information to get the process started. We also scheduled my amniocentesis. I am not gonna lie I am pretty terrified of a needle being stuck into my belly!

Diagnosis

September 23, 2014

We arrive at St. Vincent and check in at the Center for Prenatal Diagnosis office. We're not really that nervous. After all, the research we've looked at showed in most cases parents with babies who had hydrocephalus said that their OB said everything was fine and baby would grow into it. That is what we were expecting. We were not expecting to hear a diagnosis.

We go into the ultrasound room and get all set up and see our precious little baby on the screen again. We see the little mouth with the same big upper lip as our other two kids. And tiny little fingers and toes. The ultrasound tech pays a lot of attention to the arms and legs and feet. Multiple measurements on those areas. We see the baby's head and for the first time really see the shape. It's not round like a 'normal' baby. It's lemon shaped. This is concerning.

The ultrasound tech measures the ventricles and other last minute things before finishing up and calling in our doctor. His name is Dr. Harold Bivins. He looks over the images and asks us if we knew why we were referred to him. I told him that we knew the ventricles in our baby's brain were measuring large and were sent here to see why. Then he said two words that changed our life forever. Our baby has SPINA BIFIDA.

 

 Spina Bifida is an opening in the spine. It happens in the first 6 weeks of pregnancy when the cells are still forming. Dr. Bivins turns and talks to our genetic counselor, Erica. We follow Erica to her office to talk about options. First, she asks us how we are. It's a lot to take in! Then she asks us if we want to terminate the pregnancy. I am crying and cannot really speak but Joshua and I both shake our heads and he says "NO." She says that she has to ask, 50% of babies diagnosed with Spina Bifida are aborted. "Are we sure that we want to keep this baby?" Again we say we do not want to abort our baby. This was a planned pregnancy. We wanted this baby. Who are we to say this baby is not good enough? God makes no mistakes.

 

Erica talks to us for a long time about what the future holds for us and our baby and about what our options are. Surgery is inevitable. The nerves in the baby's spine are exposed to amniotic fluid and are being damaged. This causes paralysis and any number of other issues. So we can do Fetal Surgery, where they do the surgery now while I am between 23-26 weeks pregnant. There are a number of risks and criteria to meet to be qualified for fetal surgery. The other option is to go to term and the baby will have surgery after they're born. Most likely needing a shunt to drain the fluid in the brain and definitely needing assistance to walk, if they can at all. The damage to the nerves is not reversible. We are interested in fetal surgery and ask for more information. They need blood work today and eventually an amniocentesis. We leave the office numb and in shock. How are we going to tell our family? How are we going to deal? What do we do? So many questions. All we know is that everything happens for a reason and God has everything under control. We just have to take this one day at a time.



The Burke Family

My name is Hope Burke. My husband Joshua and I have been married since 2010. I am a stay at home mom to two beautiful kids. Our daughter Kaleya was born January 24, 2010 and she is so amazing. She has always been a good little girl with excellent manners and a caring heart. She became big sister to our son Reyden on July 31, 2012.  Reyden is a spunky redhead and full on boy! He is quite the handful and is always getting in to something! But his sweet little smile always wins us back over!

After deciding we were ready for another baby we started trying. We found out we were expecting our third child on May 30, 2014! We visited the our local pregnancy care center and after an ultrasound were told our baby was due February 8, 2015. We were very excited!

Our life was pretty simple. Our life was normal. And all of that changed on September 19, 2014. We went to our normal doctors office for our 20 week ultrasound. Kaleya was so excited to see the baby. I told her about the "magic wand" that they use to see inside my belly. The ultrasound tech is very nice. She lets the kids feel the jelly that she put on my stomach and they really liked that. She is talking and taking measurements and everything is fine. After a while she starts asking questions. About my LMP and what my due date was. I told her if you go off LMP my due date is January 25 but at our 10 week ultrasound they told us February 8. She is busy with her measurements. And you know the thought never occurred to me "something is wrong." Not even when she didn't take the time to show us our baby's face. Still not when she didn't print any pictures for us. She hustled out the door saying she had to talk to Dr. Cline. She comes back and says Dr. Cline wants to talk to us. So we pick up our stuff and move to an exam room and wait. We are a little irritated because Joshua has to work today and they were already behind schedule. Dr. Cline comes in and asks us how we are, talks to the kids and tries to get Reyden to give her a hug. She then looks at us and tells us that the ventricles in our baby's brain are measuring too large. Ventricles hold fluid in the brain. That's normal. Our baby has TOO MUCH fluid. She doesn't know what caused this. She refers us to a High Risk OB at St. Vincent. Their technology is better and they can tell us more about our baby. She said most of the time it's nothing, they say "Oh this will be fine, Baby will grow into it" but -worst case scenario- it could mean Down Syndrome, Mental Delay, or other health issues. I can not explain to you exactly how it feels to hear that the baby that you thought was perfect, isn't. That something is wrong. It's absolutely terrifying. This was Friday. Our appointment was Tuesday. That was the longest weekend of worrying I had ever experienced.