Patient Stories

Emma B’s Story

Brent and I went to the appointment excited and nervous. We met with the nurse who gave me all kinds of pamphlets, prenatal vitamins, and a folder of what to do and what not to do. Brent and I briefly met with our doctor prior to our first ultrasound. At that time Brent made a joke saying, “ok doc, tell me there is only one baby”. Keep in mind, we had never met this doctor prior to this day. The doctor took us to a small room with a kind of, sort of outdated ultrasound machine. I remember laying on the examining table and Brent leaning on the counter in front of me. The doctor proceeded with the exam and told us that we were having twins. Brent said he had some thought and had grab hold of the counter. My response of course was “holy cow” and started crying. The doctor said she would give us a few moments but would like to take us to another room that had another ultrasound machine that could look at the babies in more detail. I got myself together and we both met her in the other room. The doctor again proceeded with another exam. I remember seeing the movement on the screen with the two babies. Brent, of course jokingly said to the doctor that there better not be another baby. The doctor looked at Brent and looked at me and said, “Yes, there is one more”. We went from having two babies to three babies all in a matter of minutes. No fertility, no drugs, nada! All natural. I started to cry again. I also felt bad for the doctor. She went from not knowing us to knowing us in a matter of an hour. She further explained to us that we all should be “cautiously optimistic” during this time and that she could follow the babies up to a point, I believe to 20 weeks. We would then need to move to a doctor at hospital that specialized in high risk for the remainder of the pregnancy.

We left the doctor’s office thinking “ok, we are going to have to go from my little Nissan Sentra to a big ol’ Suburban, a house to accommodate us, no job because we wouldn’t be able to afford daycare, and who the heck is going to help us with three babies”. A lot to digest and we haven’t even eaten lunch. So, I became a weekly guest to my OB/GYN due to the fact I was considered high risk. On week 14, I went in to visit my doctor and we found out that the two babies sharing the same placenta no longer had heart beats. The single baby was fine, heart beat great, and everything else I heard was blah, blah, blah like the teacher from Charlie Brown. I remember seating in the room all by myself and thinking, “this is going to be ok” however it wasn’t. I reminded what Brent’s dad said to me, “God is not going to give you more than you cannot handle”. I kept thinking that. I went out to the car and began crying and couldn’t stop. I called Brent, where he was on the way to  a company meeting. He immediately turned around and came home. That day was probably one of the worst days I have ever experienced. Brent was great about consoling and he was a much needed distraction. To this day, I have a hard time listening to the song by Rascal Flatts, “Bless the Broken Road”. This song was playing on the radio that day and the words are so powerful but meaningful.

Week 17 we were scheduled for a thorough ultra sound examination at the Women’s Services that does genetic counseling. We met with a wonderful woman who explained the different tests, how the tests score, and our options. Brent and I still laugh about that day because we honestly did not have a clue about any of the procedures or the extent of the people that were involved. The U/S tech started the exam like the multiple other exams that we have had. She told us that we were having a girl which is always exciting to hear about the sex of the baby. She further explained to us that the organs, head, eyes, etc… looked great. The tech finally looked over the limbs and began to reposition my belly and the probe. You could tell she was interested in one area of the baby. The tech left the room and came back with not only the woman who explained the procedures to us but also another tech, a student, and a doctor. We had approximately 7-10 people in the room including us. Everyone was so interested in the ultrasound monitor that I couldn’t see what they were looking at. I actually got a little upset because I could not see my own child. Basically, what they found they did not really have an answer for us. They told us that our child would have a “syndrome” but they were not sure of what type of syndrome. The doctor explained that Emma would be born with both her legs “reversed”. We hadn’t had a clue what they were talking about. Brent and I both asked several questions however, no one had answers. We went home and researched everything we could. Brent and I met with a Pediatric Orthopedic Surgeon who later became someone far more important in our lives that we could ever imagine. Unfortunately, at that time, no could tell us the extent of Emma’s legs or anything. The Pediatric Orthopedic Surgeon told us to be “cautiously optimistic” that we would have more answers once she is physically here and they could actually physically see her. Talk about another blow to the stomach. And that phrase, “cautiously optimistic”, I honestly hated those two words. I use to say that they taught those two words in medical school and nothing else.

November 22, 2005, 3 ½ weeks from our original due date, Emma Catharine was born. She was born with bilateral hip dysplasia and her right knee dislocated, going in the opposite direction. Emma was immediately given a splint to keep her knee straight and this is where the multiple visits to the doctor’s office began. At age 3 months, Emma under went three surgeries to correct both hips and her knee. On the right knee, they actually had to go in and cut part of the muscle to release it in order for her knee to position itself correctly. She then wore a spica cast for 6 weeks to help set her knee, femur head (ball) and socket. I never thought I would see the day that they took the cast off. From then on, she had to wear a brace in the evening while she was sleeping. I cannot tell you how many braces we went through (measured and fitted) because at that point she was beginning to grow like a weed. She soon figured how to maneuver her legs out of the brace while sleeping and turn over on her stomach to sleep. We began physical therapy in order to strengthen her right leg/knee and to stimulate the growth of the hip bone and socket. It took Emma a lot longer to do more of the motor skills that a normal baby from 6-24 months could do. She actually did not seat up by herself until she was 9 months old. Emma did more of the “military crawl” versus crawling on all fours. She would stand holding on to the couch or table but would not put a lot of pressure on her right leg. Emma was given a walker with wheels to learn to walk. And let me tell you, with the walker, she would chase the dog around the house, laughing, and carrying on like a normal child. She did not know anything different and neither did we. She was a happy baby.

And at age 22 months, she began to walk on her own. She still needed therapy to strengthen her right leg/knee. At the time, she was still having difficulty to walk up and down the stairs, running, skipping, jumping etc… She relied on her left leg a lot for balance. Emma still cannot sit “kris kross applesauce” however, she does not let that affect her. Every once in a while, she talks about her “boo boo” (scars) and tells us a story about them. I know she won’t be a track star nor will she be in the Olympics for track and field however, I do know that she is very happy little girl who loves to dance.

I can honestly say that if it wasn’t for our doctor and therapists, I wouldn’t have known what to do. They were very honest with us and gave us hope. They did not give us any false pretenses especially during her procedure. I can now say that I believe in the 2 words, “cautiously optimistic”. And I believe in families helping families.

Update 2012:
In August 2011, just before entering Kindergarten, she had another procedure. They adjusted her femur head (ball) and socket slightly up by placing 2 pins and a bracket for approximately 7 months. In March 2012, they went back and removed the pins and bracket. Currently, she is doing really well from the procedure and they are monitoring the placement of her right hip/socket every 6 months. Emma was able to take the pins and bracket (in a sterile closed bag) into her Kindergarten class for show and tell which, according, to Emma and her friends, was “cool”. Emma is now 7 years old and in 1st grade. She enjoys biking, swimming, tennis, and collecting seashells.

Update 2013
January 2013, we went for our 6 month checkup and the femur head (ball) slightly away from the socket. We are currently doing exercises in the evening to strengthen the muscle in her right hip/thigh. June, we will revisit the possibility that another procedure may take place.