The WORST Question I've ever been asked. The answer is NO!

This post is a follow-up to my July 18 post titled "That day at McDonalds when I got the call...that changed us."

"Do you want to terminate the pregnancy?"

This horrible question was asked to us the day after our world was rocked with the call from my OB saying that it appeared our unborn baby had a abnormality of the spine. We found ourselves sitting in the office of a maternal fetal medicine specialist in Annapolis, MD. If you have never heard of that type of specialist (like me at that time), they are the doctors who help women with high-risk pregnancies. That includes moms who’ve had multiple miscarriages, those expecting twins or more multiples, women over 35, and those of us with babies who will require extra special care.

We had asked our pastor’s wife and friend, Doris, to come with us and provide emotional and prayer support as we stepped into this unknown world.

Honestly, I felt pretty out of place as I sat in the waiting room. The other women in there all looked at least 10 years older than me and way more pregnant. At 26 years old, I was pregnant for the first time and my 5’7” frame mostly hid the fact that I was already five months along.

Here I am 5 months pregnant with my first child. This photo was taken May 17, 2008
about 2 weeks after I learned about Adria’s diagnosis.

Finally, it was our turn to talk with the genetic counselor. I had never heard of them before either, but a genetic counselor is a unique healthcare professional with training in both medical genetics and counseling who assist in educating and supporting families with high-risk pregnancies or those at-risk for complications. According to the National Association of Genetic Counselors, they discuss the medical, psychological and familial implications of genetic contributions to “diseases” by:

• Asking detailed questions about family and medical histories to consider what may have caused this issue and what’s the future likelihood
• Educating about inheritance, testing, management, prevention, and resources
• Counseling to promote "informed choices" and adjusting to the risk or condition

So there we sat, listing every member of our large families and any health challenges. Yes, there is a history of cancer and high blood pressure, but no known disabilities.  We were healthy with my only issue being a tendency to easily faint when in physical or emotional pain.

Bottom line, we had no apparent increased risk to bear a child with spina bifida, but in most cases of spina bifida there is no known family history. It can just happen.

So what is spina bifida? That came next. I’ll elaborate more another time, but in layman’s terms it’s when the baby’s spine does not form properly early on in the pregnancy and can cause the spinal cord to protrude from the baby’s back in a sac. Because critical nerves are never formed properly – spina bifida often impacts many functions of the body and can cause paralysis, lack of bladder and bowel control, fluid on the brain, educational delays, deformed limbs and more.

It affects each person differently and is actually the most common permanently disabling birth defect. There are different types, but the most common - and most severe type - is myloemeningocele. That is likely what our baby has, since we were sitting there that day.

This image shows what spina bifida (myloemeningocele) can look like on
a baby in the wound. Provided by Children's Hospital of Philadelphia website.

Deep breath. Too much information. Did not know what to say but still held out hope that they might be mistaken.

 

After all the questions and discussion, came the worst question I have ever been asked.

 

“Given this information, do you want to terminate the pregnancy?”

I liked our genetic counselor, but she may as well have asked, "Do you want to kill your baby because she's got some serious issues?"

NO! NO, NO and NO.

I thought, are you kidding me? Are you seriously asking me this horrible question just days before I will celebrate my first Mother’s Day anticipating the birth of our child. This information scares the crap out of me, Yes. But in no way does it change the level of affection I hold for the life growing inside me.

To put it into perspective, let me share an excerpt from my personal journal that I had written several weeks before that day after hearing my baby’s heartbeat for the first time.

I was in total awe and felt rather nostalgic and sentimental the rest of the day. It’s indescribable how incredible the miracle of life is. Wow, God. Quite Impressive…It feels as though the bond of carrying our child is drawing Adrian and I closer together than ever before. I know we’ll face our share of parenting issues, but there’s nothing like a life that’s formed as part of both of you out of love, to unify.

I had no idea what was to come when I penned those words in the privacy of my room. But as I read them again, they mean more to me than ever.

Genetic counselors are trained to ask that question under the guise of family planning, and from what I understand, a decent percentage of people say “Yes” when given the option to terminate after learning their “fetus” has issues. Granted, some issues are much more severe with limited life expectancy, but I still strongly believe in giving a baby the opportunity for Life.

I sit here and look at this beautiful, happy girl enjoying the Disney channel like thousands of other pre-schoolers and think how sad it is that someone would choose to deny her life and deny themselves the joy of being her parent.

After letting them know that we would continue with the pregnancy no matter what, I got to see my baby again. We went in for a level 2 ultrasound with the doctor. There on the monitor, in much higher definition was a precious, active little baby who they quickly confirmed was a girl.

Silent tears rolled down my cheek as I held my husband’s hand and looked at her.

And then I saw it clearly. Her bubble. The outline of a sac protruding from her lower back. Our baby girl had spina bifida.

Though I was afraid, I suddenly felt closer to this child inside me, realizing that life would be much different for her and us than I had ever anticipated. But I loved her even more with that knowledge.



Let's all celebrate together, it's not everyday a future king is born

You have to admit, there is something great about a monarchy.

To be born to be a king. To unite as a country, truly as an empire, and celebrate the birth of a child who will one day lead your people. To not wonder if a decent candidate will arise from amidst a sea of politicians, but to actually have those born into and trained for leadership. It almost makes me want to be British...almost.

But, I will sit by on my comfy couch in America and celebrate with the Duke and Duchess of Cambridge at a distance. Congratulations William and Kate on the birth of a healthy son and what seems to have been a smooth delivery for Kate with her leaving the hospital so soon.

How excited they must be; they truly look happy. That fresh glow of first-time parents realizing their newborn baby is more amazing than they ever imaged, regardless of his royalty.

I think of Kate so much in all of this. She is my age, born Jan. 9, 1982, just a month before I was born. Prince William arrived just a few months later in June. It's actually pretty neat to think that my mom was pregnant with me at the same as Princess Diana and Mrs. Middleton were expecting their royal babies.

Kate genuinely seems to be a lovely, charming and stylish lady who fits her role perfectly. But I am sure she had the same excitement and fears as all mothers when she first found out she was expecting. Hoping and praying all would go well and that her baby would be healthy. But wow, I can't imagine the extra pressure she faced hoping nothing would go wrong when the child in her womb is an heir apparent to the British throne!

I hope the baby sleeps some tonight. That first night home from the hospital can be a doozy. I wonder if she plans to nurse? That's such a special, bonding experience for a new mother and her baby. I'm sure she has help, but they appear to be a fairly self-sufficient couple. I wish them the very best!

Honestly, I'm not a huge follower of this royal hype and did not intend to write about this, but I am at a very similar place in life as they are and share in their joy - though on a much different level.

Plus, my friend Lori make a comment on facebook that I liked and agree with:

"I am actually thrilled to hear about the royal baby because babies make me smile and there is way too much constant negativity in the news, every day. Happy news is a refreshing welcome change."

Thank you. So true. When a baby can unite a country and even much of the world in celebration, that is something to be excited about.

The happy royal couple greets the world with their newborn son today.
Photo courtesy of a Yahoo news article.

She walked on the beach – with NO braces!

Yesterday, our family enjoyed our first day of swimming at the beach this summer season. After living in the Midwest the last three summers, the Delaware beaches are a welcome part of returning to the area close to our families.
My husband's sister Leona and her family just got a beach tag for surf fishing, so we joined them and threw our beach supplies in the back of their truck and hopped on the tailgate to ride across the sand down to the water at Cape Henlopen State Park. Hurray for the easiest way to get to the beach with two little ones, a cooler, and bags of towels, snacks and beach toys!
This was a fun day of firsts for us. At 19 months old, it was Johanna's first time standing on the shore and feeling the water of crashing wave run over her toes. She giggled as the water receded and her feet sunk deeper in the sand. What a joy to watch such a young one run around with delight along the water's edge. Thankfully, she wasn't too adventurous and trying to go in deeper on her own.

Johanna enjoys the feel of the sand in her toes for the first time. What a cutie!


The other great first was that Adria actually walked through the sand without her leg braces (a.k.a. DAFOs)! This is really quite a miraculous activity for her. For her to demonstrate the leg strength and balance necessary to take steps on uneven sand is impressive. And to be honest, when I learned of her spina bifida diagnosis years ago, I did not think this would even be possible. Praise God for His touch on her young life and answered prayers!
She held my hand as she took her first steps wearing just her swim shoes. But, soon she let go and was ready to walk toward the water on her own. Though she was unstable and fell a few times, it didn't upset her and she managed to get up and walk to where she wanted to go.
That said, Adria did not appreciate the Atlantic Ocean like her little sister and screamed when I tried to put her in. Playing in the sand is more her thing for now.

Everyday miracles! Adria taking her first steps on sand without any assistance.

It was last autumn when Adria first started taking a step or two around our home without her braces. We loved it, but because her ankles are so weak, we feared encouraging it and possibly causing damage or too many falls. However, after we met with the orthopedic doctor, he assured us that it was good for her to walk around the home barefoot. Amazing!
What's really interesting is that Adria and Johanna started walking unassisted around the same time. Adria started taking steps with no braces soon after her 4^th birthday in September and Johanna took her first steps about a month before her first birthday in December.
How exciting to experience these major milestones for our two daughters around the same time! And here they are again sharing a similar first. Walking barefoot on the sand for the first time together. It's a beautiful thing to see.

Daddy and Johanna loving the ocean.

 

That day at McDonald’s when I got the call…that changed us

Each of us has defining moments in life. Some are great – Winning a championship, getting the acceptance letter to college, saying yes to a marriage proposal, seeing the plus sign on the pregnancy test, etc. Then, there are those that break us – losing your job, learning dad has cancer, having a miscarriage, hearing an accident has taken away your loved one way too soon. We don't ever forget where we were in that moment.

My moment came in the parking lot of a McDonalds in Dagsboro, Del. It was May 5, 2008. I was feeling great and barely noticeably pregnant at 20 weeks along. My co-worker Alison and I had just stopped for lunch after our weekly morning sales meeting before heading back to our new home models.

There was a voicemail on my phone; as I listened to it and heard the voice of an OB doctor I had never met instead of the midwife I'd been seeing, I was alarmed. I had just had my first ultrasound the previous Friday afternoon, it was a long appointment that lasted over 45 minutes with a full bladder, but it had been a special time of seeing our baby's form for the first time and learning she was most likely a girl. The ultrasound tech had been pretty quiet and just sent us on our way simply saying our doctor would review it.

I called back. The OB said he wanted to tell me in person, if I was nearby. No…what's going on?

Then it came out – It appears your baby has an abnormality of the spine. They could not be sure, but it appeared to be spina bifida of the sacrum.

He said he's sorry to tell me over the phone. I need to get a Level 2 ultrasound with a specialist to assess things. And then the call ended.

What is this that's wrong with my baby? I've heard of it, but know nothing.

I had somehow maintained relative composure during the call, but as I called my husband to break the news…I lost it.

Start sobbing. Confusion. Uncertainty. Hopes and Dreams come crashing down. Barely able to speak. He told me to come home, we needed to be together.

My friend Alison came back out of McDonalds to check on me and gave a big hug as I tried to tell her. I couldn't eat. I knew I couldn't work. I could barely drive.

My head spun as I drove the 40 minutes home. The thought of my baby being handicapped or disabled had never even occurred to me as a possibility.

I am the second of 4 healthy children that my mom gave birth to naturally. My husband is one of 8 children, not one born with any serious health concerns, and most born in a home not a hospital. In fact, both my husband and I were healthy babies born in a home environment. He in a small cabin in Ontario, Canada; me in a duplex home in the tiny town of Greenwood, Delaware.

When I had gotten pregnant in December, it happened easily, just a month after stopping preventative measures. I was at the peak of my personal fitness and in the prime of my life at 25 years old at the time of conception. Just a couple months prior, I had run my first (and only full) marathon of over 26 miles through the rolling hills of San Francisco, Calif.

To date, my pregnancy had been great with just the normal exhaustion that comes with life forming inside me, and I'd had minimal nausea or morning sickness.

Maybe they made a mistake. This really was not possible for me. For us. Was it?

We scheduled an appointment for the very next day to see get the level 2 ultrasound with a specialist in Annapolis, Md. At just over an hour away, that was the closest one to my home.

My husband and I would just have to wait until then to learn more. That night we held each other close and prayed for our baby.

 

 

 

Getting New Braces - Not the kind for your Teeth!

Last week Adria got new braces. These are for her feet, not her teeth! We’ve often made reference to her braces and gotten confused looks as to why a 4-year-old would have braces. Then we chuckle and clarify that they are leg braces, more specifically AFOs – Ankle Foot Orthotics.

She wears orthotic braces, which are designed to correct and assist with bone, joint and muscle disorders, much like orthodontic braces are used to correct irregularities of the teeth.

 

Adria must wear them for walking support because she has very weak ankles and fairly severe outward pronation in her feet. She has progressed to be able to walk without them (Amazing!), but she is unstable and often falls.  She was fitted for her first pair at nine months old, long before she was walking, and typically gets a new pair once a year.

 

However, we got this new pair when her others were barely six months old.  That pair was just not working well for her. They were a SureStep brand AFO, but they were so thick and difficult to put on her and often caused her sores. She didn’t complain much because she has limited sensation in her lower legs, but no mommy wants to see her girl get blisters and open sores L

Her orthopedic doctor at A.I. DuPont Hospital recommended that she get a new pair of braces earlier than normal. Adria had been fitted for the previous braces at an orthotics center in Richmond, Va, since we lived there at that time. But now that we are back in Delaware, we returned to Lawall Orthotics & Prosthetics – the same place that fitted her for her first pair. We have found them to be a great group to work with, especially since they have locations right in A.I. DuPont Hospital and in Dover. Here’s their web link for more info: www.lawall.com

Lawall fit her for a new type of brace that she has not previously had called a DAFO –Dynamic Ankle Foot Orthotics. So far, we really like this Cascade DAFO brace as it has great padding, a little less plastic and much less stiffness.  Now, we officially know what a “potato chip” is in AFO terms – it’s a little extra pad shaped like a Pringle chip that goes on top of the foot between inside the brace.

Click her for more details about pronation and the DAFO brace: www.dafo.com

The DAFOs come with great color and pattern choices too, so Adria is proudly sporting her flower/lady bug braces with purple padding and pink straps!

Of course, with new braces comes a trip to the shoe store and the ever challenging task of finding shoes that are wide enough to fit securely around the AFO. This trip she walked out with a cute pair of size 9 pink Converse sneakers J

Adria making friends with "my size" manikin at the mall before buying new shoes.

 



Braces on the left are the new Cascade DAFOs, while the old SureStep are on the right.

Happy girl showing off her new DAFOs with pink Converse sneakers!