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Zion-Grace Elizabeth Larson

Zion-Grace, baby with anencephaly

Last year my wife and I finally felt like the time was right to have another child. Elizabeth started taking her prenatal vitamins and extra folic acid for a few months and then we tried to get pregnant. We were successful the very first month and were very excited about adding a new baby to our family. At the same time we both seemed to have the feeling that everything was not going to be just right with this pregnancy. In fact we had had this feeling for a number of years before we got pregnant but knew that no matter what the problem was going to be that we would be able to face it together.

Everything progressed normally at first just like it had with our son Spencer and our daughter Natalie. Elizabeth could feel the baby kicking and the night before our 1st ultrasound I could feel the baby kicking a lot. In fact the baby was kicking for several minutes straight. Almost as if to say "Hi Dad" I can't wait for you to see me tomorrow.

On February 18th 2008 we went in for the ultrasound. A lot of people had asked us if we were going to take our 2 kids who were 8 and 9 with us but we both felt very strongly that it wouldn't be a good idea. We soon found out why. At first the ultrasound progressed normally. When the tech got to the heart Elizabeth made the comment that her heart looked really strong. The tech didn't say anything but was instead concentrated on the screen. She then excused herself from the room saying that she needed to go talk with the Doctor.

We both knew right away that the feelings we had had for several years were coming to pass, we just didn't know what the problem was going to be. We both thought it must be a problem with the heart or something to do with it. Almost 15 minutes passed as both of us shed some tears and said silent prayers.

The tech finally returned and explained that the doctor had been called out on an emergency delivery and wouldn't be back for awhile. She went ahead and explained that she could not see the top of the baby's skull which meant that more than likely the baby had a severe case of anencephaly. She explained that it was always fatal and that the doctor would talk with us about our options.

We then asked her if she could tell us the sex of the baby and she confirmed that we were going to have a little girl. She then took us to a room where we could wait for the doctor to return. We shed a lot more tears and continued to pray. After 45 minutes she finally came back and said there were complications with the delivery and that it would be awhile before the doctor could return but that she had arranged a phone call with our regular doctor who was on vacation.

He explained some more about the condition and told us that we could induce labor when he returned or that we could wait. For both Elizabeth and I our goal was the same and that was we wanted to do everything we could to increase the chances of having a live birth. This little baby girl was our daughter and if possible we wanted to welcome her into the world before she had to leave it. He arranged for us to meet with a specialist the next day to learn more about the condition and what we could do to increase the chances of achieving our goal.

As we drove home we talked about how to best share the news with our son and daughter. We decided to explain to them that we had some good news and some sad news. As we drove into the garage they both came running out the door with huge smiles on their faces. It was difficult for me to keep my composure but I knew that it was important to do so for their sake.

We sat them down and explained that the good news was they were going to have a little baby sister. The sad news was that she was probably only going to live for a few minutes, a few hours or maybe a few days. But that the best news of all was that we knew that when Jesus Christ comes again that we will have the opportunity to raise her from an infant until adulthood. We answered lots of questions and had a very special family prayer.

I spent a lot of time online learning everything I could and found so many wonderful resources. The next day the perinatoligist confirmed the diagnosis and explained that our best chances of having a live birth would be to induce at around 34 weeks. She did say however that sometimes the babies come on their own before then, especially if there is a build up of the amniotic fluid.

The next step we took was deciding on a name for our daughter. It was the first time that we never had to worry about other kids teasing her about her name so it was kind of fun exploring options we would have never considered otherwise. We decided on Zion-Grace Elizabeth Larson. For us the name Zion means the pure in heart of which she is truly one and Grace because it is by the Grace of God that we will be able to hold her and raise her again.

Here is the email we sent to friends and family announcing our news.

Subject: It's a Girl!!!!!!!!!!!!!!!!!!!!!

The good news is we are going to have a little girl. The sad news is she is going to be born about 6 weeks premature and will only live for a few minutes, or if we are lucky, a few hours.

Her skull did not form above her eyebrows which has exposed what brain that was able to develop to amniotic fluid. The specialist that we spoke to said that these babies don't feel any pain and that they are very peaceful. She said that after birth their little hearts start to slow and they pass away very peacefully. Our daughter is however very much alive right now and it has been wonderful to feel her kicking. She even waved to us during the ultrasound. :)

The name that we have decided to give her is Zion-Grace Elizabeth Larson.

Elizabeth and I are doing great. We are both experiencing a peaceful sadness but are comforted with the knowledge that after the resurrection we will have the opportunity to raise this little baby until she becomes an adult. But most of all we are comforted to know that she will be part of our family for time and all eternity and that we will have forever to get to know her.

Spencer and Natalie are very disappointed that they won't be able to teach her to do all the things that they were planning on like playing football (Spencer) and doing girl things (Natalie). But they are both coping very well. Both of them are praying that their little sister will live long enough so that they will have the chance to hold her.

The miracle that we are praying for is that as long as it is Heavenly Fathers will we would like to be able to spend a few hours with her while she is still alive. And we would like to invite you to join us with your faith, prayer and fasting that we might receive that miracle.



The next few months seemed to fly by. We looked for every opportunity we could to bond with Zion-Grace. The kids would talk with her and play their musical instruments to her. We took lots of photos and through the Now I Lay Me Down to Sleep foundation found an angel of a photographer. Our perinatoligist also arranged for us to meet with Angel Watch a group of dedicated women who help families in our situation prepare for what lies ahead. We truly felt like we were experiencing almost daily tender mercies as we prepared for the most difficult experience of our lives up until that point.

Zion-Grace, baby with anencephaly

The next section of Zion-Grace's story comes from an email and part of the talk that I had my Dad read at her funeral.

For the past few weeks Elizabeth has been in labor with Zion-Grace. Because Zion-Grace was still a micro-preemie size our doctor recommended that as soon as Elizabeth was having contractions 7 minutes apart that we should head down to the hospital. Last Thursday throughout the day the contractions were consistent and in the afternoon for several hours were 7 minutes apart. But when we arrived at the hospital she was only dilated to a 1 so we got to come home.

Because Elizabeth had been having contractions for so many weeks and because she was rapidly gaining amniotic fluid we decided, with our doctor, that the safest course of action was to go ahead and induce Zion-Grace earlier than we had originally planned. So on Monday April 14th we went in at 6:30 am.

Elizabeth was amazing. The labor was much longer than we had anticipated mainly because the Doctor felt that if we could deliver Zion-Grace with her sac intact then we would significantly increase our chances of having Zion-Grace born alive. This proved to be very true as with each contraction Zion-Grace's heart rate would remain consistent vs if the sac has been ruptured the heart rate would have decreased significantly during each contraction. With anencephaly babies a long labor combined with the water being broken usually results in the death of the baby while still in utero.

One of the fun memories of the labor was as one of the nurses was checking to see how dilated Elizabeth was, Zion-Grace gave a good hard kick that connected with the fingertip of the nurse which caused her to pull back in surprise. Elizabeth's labor finally started progressing rather quickly at around 3:00 am on the 15th and the doctor prepared to deliver her. After pushing with each contraction at around 3:30 am during a contraction and a push the amniotic sac burst drenching the doctor from head to foot. The nurses were so stunned that they just stood there frozen until the doctor politely asked for towel.

Unfortunately when the sac burst it also resulted in a partial placental abruption. This meant that Elizabeth was hemorrhaging and Zion-Grace was no longer getting much of anything from her umbilical cord. The other problem was that Elizabeth's uterus stopped contracting and even though she was trying as hard as she could the only part of Zion-Grace that was coming out was one foot. The problem was Zion-Grace was doing the splits which resulted in one foot at the top of the uterus and the other foot coming out. This made it impossible for the doctor to pull her out without first physically inserting his hand into the uterus and grabbing the other leg at the top of the uterus.

On his first attempt he could tell that it was unbearably painful for Elizabeth so he sent for the anesthesiologist to give Elizabeth an epidural. By the time the anesthesiologist got there and the epidural was in place it was around 3:45 am. The room was very somber because by this time the hemorrhaging was significant and the doctor didn't think Zion-Grace was going to be born alive. He then spent the next five plus minutes trying to get Zion-Grace out. At 3:52 am he was finally able to pull her out. We later found out that he thought she was dead and had gone home that night thinking that he had failed to help us achieve our goal of having a live birth. I was able to cut the cord and she was quickly placed on Elizabeth's chest.

The opening on her head was less extensive then we had thought on the top front of her head but was more extensive on the back as it went all the way down her neck to her spinal column. After drying her off on Elizabeth's chest and putting a hat on her head the nurse's took Zion-Grace over to the baby table to check for a heart beat. Not only was she still alive but Zion-Grace then confirmed it by taking a deep breath that caused her little chest to shudder.

By this time Spencer and Natalie were in the room and I was able to place her in their arms so they could experience what they had been praying for since the day they found out she had anencephaly. After they had their turns holding her I asked the nurse to check Zion-Grace's heart beat and she confirmed that it was still going strong.

We got to experience a total of 48 miraculous minutes with her alive. During that time she never made a sound and didn't move much beyond taking around 10 breaths. Her other stats were 1 lb 10 ounces and 10 1/2 inches long. Both Elizabeth and my parents were able to hold her while she was alive and after the doctor left the room it became packed with Zion-Grace's aunts, uncles and cousins. While they didn't get to hold her while she was alive they were able to watch many of the tender minutes that we had with her. On the second to the last time that I had the nurse check her heartbeat she confirmed what I already knew in my heart and that was her heart was slowing and she was fading fast. The last few minutes of her life was spent on Elizabeth's chest with the two of us holding her. It was very special.

I have since learned that there was at least one other person in the room who was aware of the exact time when Zion-Grace passed away. Her cousin Lydia Peart, who had been born just a few days before Zion-Grace, spent the whole time on her father's shoulder and was very peaceful until just a few minutes after the 2nd to the last time we had the nurse check her heart rate. It was during the time before the nurse checked Zion-Grace for the last time that she tensed up and then made a sad face. It was as if she was sensing the passing of her cousin.

At 4:40 am the nurse officially confirmed that Zion-Grace's heart had stopped beating and that she had officially become a celestial angel that will watch over our family until we are reunited again. There were many miracles that we experienced that day including a live birth, 48 minutes of incredible memories and the miracle that I am most grateful for is that the Doctor was able to get the hemorrhaging to stop on Elizabeth without having to take any drastic measures. We will be forever grateful that we had the opportunity to welcome Zion-Grace into our family and for the many lives she has touched and will continue to touch for the better. While this has been one of the most difficult experiences it has also turned out to be one of the sweetest and I wouldn't trade it for the world.

I am grateful that my dad was willing to read this at her funeral as I know there was no way I could have.

Zion-Grace, baby with anencephaly

I thought I might add a few more details. The first is kind of a fun one and that is I had promised Zion-Grace that I would help her taste chocolate if she was born alive. I almost forgot my promise but before her heart stopped beating I was able to help her become the youngest person ever to taste chocolate.

The day of her funeral was a wonderfully bittersweet experience. I was able to have some very special and sacred experiences that day. Ones that I will never forget. It was also the hardest day for Elizabeth as we drove away from the cemetery for the first time. You can read the talks and see pictures at her website.

Because so many of Elizabeth's siblings had to fly back before the funeral we actually ended up holding a memorial service for Zion-Grace the day before she was born. This may seem a bit unorthodox but I think it was one of the best things we could have done to prepare us for what we would go through the next day. I actually go the idea from Morrie Shwartz of Tuesday's with Morrie fame.

One of the fun things that came out of it was that because it was held on a Sunday we bought the balloons for the balloon release the day before. This forced us to buy mylar balloons which turned out to be the best thing. The benefit of the mylar balloons is that you can see them forever and they look like little stars twinkling in the sky. Another thing that we did for all the cousins is we bought each one of them a little teddy bear that they could hold during the memorial service and funeral. It was a gift from Zion-Grace.

A few weeks after her funeral we took a family road trip that lasted 2 weeks and 5000 miles. It was very healing for us and there were many times when we could feel Zion-Grace's sweet spirit with us.

It has now been a few months since we welcomed Zion-Grace into our family. I still miss her and think of her often. A friend of mine shared something with me that I found very helpful in the healing process. His son had passed away from a year long battle with cancer just when we found out that Zion-Grace had anencephaly. He said that just because the pain from the loss starts to ease does not mean you are forgetting your child. And that more than anything else your child wants you to continue to live a full and happy life.

My only regret is that I did not experience more skin to skin contact while she was alive. I had been told that micro preemie's skin is very delicate and that too much contact would rub it off. As it turned out I learned as I was giving her her bath after she had died that while her skin was somewhat fragile it was definitely tougher than I had been led to believe and would have been just fine if I would have had more skin to skin contact.

As for her opening it was very severe. From her eyebrows all the way down the back of her neck to her spinal column was open. But it wasn't frightening. Yes I noticed it but the bond I felt for this little girl was more intense than I possibly could have imagined. My daughter choose never to see her without a hat on but my son had no problem with it.

If you are interested in watching the music slideshow that I put together to the Road To Bittersweet song and see more pictures and read more you can visit the website I am working on for her.

I also wrote a healthy marriage tip that I dedicated to her. It might provide you with some guidance on how you can help your marriage survive this experience.

 

 

Last updated: July 22, 2008