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10 Things that I learned from my daughter Everly and her diagnosis of Anencephaly

Everly, baby with anencephaly

 

October 2017 my wife was at her 12 week check up appointment pregnant with our second baby. It was during that appointment that we learned that our baby had been diagnosed with Anencephaly, a Neural Tube Defect that is fatal. My wife and I decided to keep our baby to full term and on April 9th 2018 Everly Fern Walter was born. She only lived a few moments, but has changed our lives forever.

As I reflect back on everything, here are the top 10 things I learned from our experience:

1. Staying positive despite setbacks.

Back in October when it was confirmed that Everly was diagnosed with Anencephaly we knew she wouldn't live long. For example, for babies diagnosed with Anencephaly about 7% die during pregnancy (prenatal death), 20% die during delivery; 50% have a life expectancy of between a few minutes and 1 day, and 23% live more than 1 day (Jaquier, 2006). With that prognosis we knew death was the definitive outcome for Everly. It was both a blessing and a curse to receive Everly's diagnosis so early on in Courtney's pregnancy.
On the bright side we knew what to expect. There would be no surprises at birth. We didn't have to buy baby clothes, stroller, prepare her room etc., because we knew she wouldn't be with us long. This allowed us to plan for her arrival.
On the down side, this early diagnosis felt somewhat like a dark rain cloud hanging over our heads from October 2017 until April 2018. The challenge was trying to stay relatively positive for ~8 months despite knowing the difficult outcome we would experience in April.

This was not easy for me, but what helped me to try to stay positive during this time was to try and find reasons to live for and be a positive force for good. One of the main reasons I found was trying to think through how Everly would want me to live my life while she was in the womb leading up to her birth. Everly wouldn't want me to be a downer sulking and feeling sorry for myself. She wouldn't want me to throw a pity party for myself. She would want me to live a full happy life. A life that celebrated her and her eventual arrival.

These kinds of thoughts are what drove me to look into organ donation, starting the fundraiser, and generally trying to keep my chin up during Courtney's pregnancy. Having the #livingforeverly mentality was something Courtney and I both tried to embrace during Everly's development.

2. Having Patience Amidst Hardships.

There were multiple times in private where I got impatient during Courtney's pregnancy. For example, in my mind I have a family plan for how many kids we are going to have and at what intervals we are going to have them. But Everly's diagnosis went directly against my life plan. This naturally led me to reflect on the fact that sometimes (actually many times) we have made up in our minds our own life plan's, but then life happens and things go in completely different ways than we had originally anticipated. It's really hard not to sulk in these moments, and it's easier said than done to turn lemons into lemonade. But ultimately, what I found brought me the most peace was trying to remember that God loves us and that He has a plan each and every one of us. He would want me to endure this trial well and to be patient. For me patience in the context of the struggles of life means calm endurance. The ability to endure affliction, insult, or injury without complaint or retaliation. I can't say I did this perfectly, but trying to stay close to my Heavenly Father via prayer, scripture study, and church attendance proved to be really helpful increasing my patience amidst hardship.

3. Everyone deals with hard things in life.

After word had gotten out about Everly's diagnosis we had numerous people reach out to us privately to tell us about similar hardships/trials they had experienced or were currently experiencing. For example, other families with babies diagnosed with Anencephaly, miscarriages, stillborn babies, etc. This reinforced the point for me that everyone deals with hard things in life we just might not know about others struggles when looking at others on only the surface level.

In his April 2004 General Conference talk, President Eyring quoted a district president that he had served as a counselor to. The wise district president gave Elder Eyring the following advice, "When you meet someone, treat them as if they were in serious trouble, and you will be right more than half the time." I couldn't agree more with that quote, and having so many reach out to us to share their hardships has inspired me to treat others with even more kindness and empathy, because you never know the secret battles/hardships others are fighting/struggling with.

4. Viewing life through a long term lens is important.

I have been Mormon my whole life and my religion has shaped the way I think about this life and the belief I have in an afterlife. I believe that this is not the last time I will ever see Everly. I believe she is currently in Heaven and once I die I will be able to see Everly again. During this whole experience the hardest moments for me were typically when I was viewing my situation from a very short term perspective. In those moments all I was thinking about was how sad it was that Everly is not here with me during my lifetime on earth.

I also believe that God's main goal is "to bring to pass the immortality and eternal life of man" (Moses 1:39). Immortality is to live forever as a resurrected being. Through the Atonement of Jesus Christ, everyone will receive this gift automatically. But different than immortality is Eternal life, which is to live in God's presence and to continue as families (see D&C 131:1ÔÇô4). Inheriting eternal life requires our "obedience to the laws and ordinances of the Gospel" (Articles of Faith 1:3).
In April 1977 in a talk titled The Salvation of Little Children, given by Bruce R. McConkie, the question was asked, "Are all little children saved automatically in the celestial kingdom?" Elder McConkie responded by stating, "To this question the answer is a thunderous yes, which echoes and re-echoes from one end of heaven to the other. Jesus taught it to his disciples. Mormon said it over and over again. Many of the prophets have spoken about it, and it is implicit in the whole plan of salvation. If it were not so the redemption would not be infinite in its application. And so, as we would expect, Joseph Smith's Vision of the Celestial Kingdom contains this statement: "And I also beheld that all children who die before they arrive at the years of accountability are saved in the celestial kingdom of heaven." (D&C 137:10) They are saved through the atonement and because they are free from sin. They come from God in purity; no sin or taint attaches to them in this life; and they return in purity to their Maker. Accountable persons must become pure through repentance and baptism and obedience. Those who are not accountable for sins never fall spiritually and need not be redeemed from a spiritual fall which they never experienced. Hence the expression that little children are alive in Christ. "Little children are redeemed from the foundation of the world through mine Only Begotten," the Lord says. (D&C 29:46.)

These doctrines give me great comfort knowing that Everly has already obtained eternal life. I also am motivated by this doctrine to know that I must continue to strive to be obedient to the laws and ordinances of the Gospel so I too can receive Eternal life and live with my perfect daughter Everly and my Heavenly Father again.

5. Organ donation is harder than I thought.

This could be meant both logistically and emotionally, but I want to focus on the emotional part. There were multiple times after we made the decision to have Everly be an organ donor where I second guessed my decision. I honestly couldn't bear the thought of open heart surgery being performed on my little girl, even after she had already passed away. (My heart goes out to families that have children that go through open-heart or any kind of surgery) Everly donated heart valves. Because she donated her heart valves we were only able to spend 12 hours with her after she passed away before she had to go into surgery if the medical team was going to be able to recover her heart valves and still have them be viable. That moment when we had to pass Everly away was really hard. And after we passed her off there were multiple times where I wanted to call off the procedure. That night we passed her off was a sleepless night, as all I could think about was Everly. But I knew we had made the right decision to have her donate. The thought that kept getting me through was just thinking that Everly would want to help others by donating her heart valves. She didn't have need for them anymore, but others likely will in the future.

Everly, baby with anencephaly

I was super happy to learn that the procedure went well and that Everly's heart valves were recovered successfully. Now her heart valves have been stored and can be used for up to a year after her procedure. If/when a surgeon calls Donor Network West (The organ/tissue donation organization we used) to request heart valves for a baby that match the size of Everly's heart valves then Everly's heart valves will be transplanted for use for another baby who needs them. My hope and prayers now are that Everly is able to donate and save another baby's life. If/when transplant occurs we will be notified and have a chance to contact the recipient family. What a great experience that would be if we are lucky enough for that to occur.

6. There is still so much more to be learned about Anencephaly.

In the United States, anencephaly occurs in about 1 out of every 10,000 births. Anencephaly can often be diagnosed before birth through an ultrasound examination. There is currently no cure or standard treatment for anencephaly and the prognosis for patients is death. Treatment aims at making the baby as comfortable as possible.

The cause of anencephaly is disputed by medical professionals and researchers. Folic acid has been shown to be important in neural tube formation since at least 1995, and as a subtype of neural tube defect, folic acid may play a role in anencephaly. Studies have shown that the addition of folic acid to the diet of women of child-bearing age may significantly reduce, although not eliminate, the incidence of neural tube defects. Beyond that there is no definitive information that explains the cause of anencephaly or information on how to prevent anencephaly.

This means there is still a huge opportunity to learn more about the cause of anencephaly and to come up with preventative measures/cures for this condition. We felt passionate about helping to contribute to this cause and as a result we started a fundraiser to raise funds for Anencephaly research. We were able to raise $5.3K which I was then able to have Google match, and so the total contribution made was +$10K! Our funds were donated to the Duke University Medical Center. I was able to get in touch with the head doctor working on Anencephaly research and she shared the latest efforts they have been making to try to understand Anencephaly better.

7. The art of "mourning with those that mourn"

I was truly touched by the outpouring of love, support, and care we received from our friends and family once we learned of Everly's diagnosis. The care packages, flowers, cards, dinners, and well wishes we received were so thoughtful. I also can't even count the number of people that let me know that they prayed and fasted for our family.

I have now gained a much deeper understanding of what it means to "mourn with those that mourn" (Mosiah 18:9) learning from all the examples of countless people reaching out to our family in love.

Being on the receiving end of everyone's kindness and love has really inspired me to pay it forward. I feel as though I am more aware and sensitive of others struggles now and am really looking forward to find creative ways to help others in their moments of need. Thank you everyone from the bottom of my heart for your kindness. You have changed me for the better through your kindness and examples.

8. Tough times can bring families closer together.

Everly, baby with anencephaly

After experiencing Everly's arrival and passing I can say that I feel closer to my wife, Courtney, than I did before. When families go through tough trials together, and they try to endure them well, these trials can act as a forcing function to bring us closer together. "A smooth sea never made a skillful sailor." "Storms make trees take deeper roots." "Where there is no struggle there is no strength." While I never would have wished the loss of Everly upon our family I do feel that the difficulties we experienced this last year have brought us a lot closer together as a family.

9. Challenges can boost our faith.

I have always believed in an after life, but now my faith of that after life has been boosted since Everly's arrival and passing. I always viewed the plan of salvation from mostly a doctrinal/classroom perspective. But now that I met Everly it is no longer just words on paper, it has really come alive for me. Having a loved one pass away really brings all of this to life for me. If I could choose how my life went prior to being born, I wouldn't have included losing a child as part of my life plans. But since losing Everly one positive consequence of living through this experience is increased faith and belief in the Gospel of Jesus Christ and the belief that our life here on earth is only a small part of a much greater plan God has for all of us.

10. A life need not be long to be valuable.

Everly was born on Monday April 9th at 9:02am and only lived for a few moments before she passed away. In those few brief moments holding Everly I fell in love. She stole a piece of my heart immediately, a piece that she will have forever. I think about her all the time and miss her deeply and often wish she was at home cuddling with me. At the hospital I remember talking with Courtney about how we both were surprised by how quickly and powerfully Everly was able to capture our both our hearts. We only got to hold her for a short time, but she will always be part of our family and we will never forget her.

As I reflect back on Everly's life I am amazed at the impact she was able to have on this world during her short time here on earth. In her short time on earth, Everly was able to donate her heart valves for potential life saving use of another baby in the future, her and her story led to +$10K funds donated to Anencephaly research, and she gained a body and punched her ticket back to the Celestial kingdom to live with her Heavenly Father again. As I said earlier, a life need not be long to be valuable.

 

Matt Walter
can be reached through the following page 10 Things that I learned from my daughter Everly and her diagnosis of Anencephaly where you also find more pictures and links.

 

 

Last updated November 20, 2018