It is with great pleasure that I introduce to you, Ashley Hoff and her husband Keith Hoff. Ashley and Keith have been married for two years. In December 2009, the couple found out, much to their surprise and excitement, they are expecting their first baby on August 8th of this year.
I do not personally know Keith and Ashley, but I have spent quite some talking with Ashley about this very special article. I became a follower of her blog simply because of their story entitled, “A blog of faith, hope, and perseverance.”
From the beginning, Ashley was skeptical about spreading the wonderful news. As she explained to me, she was very paranoid and superstitious. She thought she was protecting them from something bad happening like a miscarriage. She asked those who they felt comfortable confiding in, to keep the secret to themselves. Never was it mentioned on Facebook, during conversations, and especially not to anyone who didn’t already know. Keith and Ashley made the decision once they found out the gender of the baby, they would tell all the rest of their family and friends. When their 20 week appointment arrived, they did find out they were expecting a son. However, they also received devastating news—their new son was diagnosed with Trisomy 13.
Statistics no parent should have to hear were suddenly realities for Keith and Ashley. They were told their child would have an 82% chance of living past his first 30 days. There would be a 60% chance of stillbirth, and even if their child bypassed these first two facts, there would only be a 7% chance he would make it to his first birthday. Trisomy 13, also known as Patau’s Syndrome, involves multiple abnormalities, many of which are not compatible with life. More than 80% of children with Trisomy 13 die in the first month. For children who do survive, they are labeled by medical professionals as a “failure to thrive.” How can any parent bare to hear such tragic statements?
Before writing this post I had hard time distinguishing what exactly Trisomy 13 is. Luckily, along with the many hours of research and some helpful information from Ashley this is what I know. Trisomy 13 means there is an extra copy of the 13th chromosome. Most people have two copies of this 13th chromosome. Trisomy 13 patients, have three copies. When the baby’s chromosomes first started developing, an error resulted in an extra copy of this specific chromosome. Naturally, with that being said, there is an extra set of “instructions” telling the body how to form. The body is confused by this extra set of instructions and therefore any sort of physical defect is possible from head to toe. There are three types of Trisomy 13; full, partial, and mosaic. Full Trisomy being the most severe as the 13th chromosome effects every entire cell in the body whereas, partial and mosaic only affect some.
At their 20 week appointment, they were also told they had up to the 22 week mark in their pregnancy to decide whether they wanted to terminate the pregnancy. The state they live in, Missouri, only allows terminations up to this point. They were forced to make this life altering choice in approximately a week in order to schedule the appointment. The couple felt the weight of the world on their shoulders when wracked with this option. Ashley described to me the fear and heartache that went into every thought during the process. They talked about the pros and cons, endlessly wondering if they continued to carry the child, would they be making him suffer. Would either choice be benefiting their well being more so than their son? With no answers and time nearing, Ashley scheduled the appointment to terminate the pregnancy. Although it was a week away, they wanted the option, if that’s what they ultimately decided. Ashley said she wanted to throw up as she made the appointment. She couldn’t help but think, “This time next week I will be ending our pregnancy.” As a parent myself, I tried putting myself in her shoes when she made that call. There are no words to explain the pain I felt for them. By this time, Ashley had already started feeling the flutters of their sweet little child in her stomach.
That night as Ashley went to bed, just a week away from their termination appointment, she woke up to read supportive emails from family and friends who offered any type of encouragement they could. They had all told her that God must’ve chosen Keith and Ashley as this baby’s parents for a reason and God would make sure to guide them through anything that may happen. Ashley knew the long awaited answer to their dreaded question. They would continue this pregnancy because they had to. After talking it over with Keith, Ashley discovered he’d been thinking the same answer all along. They both knew they would never regret this decision. They would never regret the choice to give their son life. Keith and Ashley have said, “It’s the easiest choice we can make but the hardest road to go down.”
A few days later, the two decided on their son’s name. Ethan Robert Hoff.
Keith and Ashley had an amniocentesis done a couple weeks later to determine whether the Trisomy 13 was linked to their genetics or a mere fluke in the development of the baby. Luckily, they were told it was a fluke and the chances of this happening again were 1 in 10,000. The same chances they held the first time around.
Keith and Ashley have been given some insight into Ethan’s physical complication. Thus far, Ethan has an abdominal defect in which his liver and intestines are located outside his abdomen wall. Ethan’s heart is also taking up one half of his chest instead of the normal one third. Ethan also has an enlarged kidney due to the fact that his umbilical cord is a single-artery cord (not double) and his body cannot flush out the wastes fast enough. Little Ethan also has Dandy-Walker syndrome which means there is a cyst on his brain with fluid formed around it. Ashley has read that this can interfere with normal brain activity. Fortunately, there appears to be no sign of a cleft lip or palate yet which is extremely common in Trisomy 13 patients.
Keith and Ashley now have level 4 ultrasounds with their perinataologist every four weeks to keep an eye on Ethan’s development. They also have a regular appointment with their OB who specializes in high risk pregnancies every four weeks.
Keith and Ashley are now 35 weeks pregnant. As their due date slowly sneaks up on them, their anticipation grows more every day. With so many unanswered questions, they have decided to leave their faith and hope in God’s hands.
I was incredibly humbled when I first contacted Ashley about sharing her story. We exchanged emails, learned more about each other, and she quickly jumped on boat for this post without any hesitations. I was quite honored that she was allowing me to share her and Keith’s journey. Her one hope is that they can provide encouragement and support to any family who is currently, or in the future, endures a similar situation. She confided in me that when they first were told Ethan’s diagnosis, they felt like the only two people who had to bare with the news.
When Ashley found out I was a military wife, I couldn’t believe the words that jumped off the page. Ashley told me with such empathy, “I can only imagine how challenging it must be to be a military wife.” Talk about being put in place. If another woman going through what she’s enduring could empathize with the lifestyle that I chose, it sure encouraged me to better myself. If nothing else, to be more accepting of others struggles and not take for granted the opportunities this difficult lifestyle has given. Difficult isn’t even a fair adjective to use in perspective.
Ashley was told this week to begin packing her hospital bag. Her OB plans on inducing her a week prior to her due date of August 8th, in the middle of the week to ensure all the necessary staff is present to deliver Ethan. Keith and Ashley were also told to make arrangements for what type of care they’d like for Ethan when he arrives. A tiny bit of say-so in a circumstance when they feel like all control is surrendered.
You can follow Baby Hoff’s journey here. This family needs all the thoughts, prayers, love, and support we can offer. As their pregnancy dawns closer to their son’s birth, they have a challenging journey before them. Please feel free to contact Ashley with loving arms, as she is so welcoming and humbled to receive anyone’s encouragement--you’ll be pleasantly surprised by her honesty and dedication to spreading the word of her son’s condition. I think ending on a quote that guides this couple is fitting.
“…whenever trouble comes your way, let it be an opportunity for joy. For when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be strong in character and ready for anything.” James 1:2-4
The morning I sent this article to Ashley to look over, I received even more devastating news. Ashley went into labor on June 6th at 2:31 am. She had minor contractions all day in which she thought was false labor. That night she went into the hospital and was already 6cm dilated. Her water broke approx. 15 minutes later. About an hour later she was fully dilated and delivering Ethan. It is with much sorrow and pain that make it hard to state this next sentence. Ethan was born with no sign of life and unfortunately after her hospital staff attempted to resuscitate him, there was nothing more they could do. After talking with Ashley on the phone, it was confirmed to me even more what a strong person she is. There’s no way to feel the emotions her and Keith are going through but we can all offer words of hope and support.
I know from all of this, Keith and Ashley would be so happy to have their story reach a family who is going through a similar situation. If you know of such a family, please pass on this story. Ashley is open to sharing her experiences in attempt to help someone else bare with the same type of circumstances.
Please keep this family in your prayers and thought.