This is the story of our Landis Tribe of 8…Hope For Our Hearts is in support of our beautiful daughter Naiyana Shalom and our family of 8, while we travel through this journey of Open Heart Surgeries and her Fight For Life and raise 6 world changers!
Our story begins when our daughter was diagnosed in utero with a condition known as a Cystic Hygroma. We were told to expect “fetal demise” or if at best a catastrophic outcome varying from chemo in a 4 month old to numerous genetic conditions of which more than half would prove to be fatal. However, despite these odds we chose, due to our faith, to continue our pregnancy and view our child for the blessing she was and that we would dedicate ourselves to showing her love and cherishing her for all the time God blessed us with her…
In time, God healed our daughter of her cystic hygroma and at 18 weeks gestation , during the anatomy scan, we were informed of an additional, “final diagnosis.”
It was then that our daughter was diagnosed with what, in laymens terms, could be described as “half a heart.” It is otherwise known,medically, as Hypoplastic Right Heart Syndrome among a myriad of other ‘piggy back’ conditions: Tricuspid Atresia, Atrial Septal Defect (ASD), Ventricular Septal Defect (VSD), and Pulmonary Stenosis and Pulmonary Hypertension. This happens to be one of the severest Congenital Heart Defects there are. She will require at least 3 SUCCESSFUL Open Heart Surgeries to save her life, with the first beginning when she was 2 weeks old after a code and flight for life.
Originally we were informed her condition was fatal either whilst still in utero or to be expected shortly after birth. It was also offered/recommended multiple times that we agree to a “medical abortion.” This is was not ever going to be an option for us. We explained our faith and our decision that “we will take her any way she is as long as she is alive…” We also explained that if she was taken home to see Jesus during our pregnancy then we would love her every moment we had her even if that meant we would never see her face flushed with life . Our providers accepted that and we moved forward teaming up to give the best care we could offer to our beloved, precious girl.
There was seemingly little “worldly” hope that could be offered. Yet, we held fast to our faith and knew our hope for our hearts was to remain in our Lord Jesus and our daughter is set to be born on around Christmas/New Year’s Eve. She IS our Christmas Miracle!
We have chosen, to love, honor and value her life and purpose for as long as God will allow us this blessing.
Though she is still set to have at least one more Open Heart Surgery to save her life; the last in the installment of the 3 part repair called a Fontan, there no promises on outcomes. We want to honor her life and the blessing that she is to all of us through Hope For Our Hearts.
Hope For Our Hearts is a Christian faith-based page dedicated to all things Naiyana Shalom! Prayers, support, updates and encouragement for fellow Congenital Heart Defect (CHD) children and families are all things you will find here. We truly hope that through sharing Naiyana’s story we can lead others to the HOPE of our Hearts…our HOPE THRU Christ and also bring together a community that is often underserved, isolated and misunderstood…Special needs children shine the face of God as the story of the blind man in John 9 reminds us: “but this happened so that the works of God might be displayed in him”(John 9:3, NIV), and we will let her little light shine!
More over, as you can imagine, traversing a life with a child that has a Life Limiting Illness is emotionally and financially exhaustive. Thus, we are also seeking financial help and donations. Our bills are astronomical as many of you know in cases like this and there are a lot of special needs items that are expensive as well; specialty strollers, IV poles, vehicle modifications etc. We are currently looking to purchase a Ford Transit (used) for our family. Naiyana has a lot of machines and we have a large family and currently to go anywhere together just isnt possible…We dont know how long we have with Naiyana and desperately want to make those memories but due to financial limitations and transport logistics it has made making memories nearly impossible. Worse, ability for visiting Naiyana at the hospital has been less than desirable and heart breaking due to these issues.
Most importantly we are seeking help thru prayers in addition to the financial support through this transition into a new normal for us, our 6 children and as our family restructures schedules and jobs/ time off *not paid* to spend priceless time with our daughter…Naiyana is not our only special needs child, and this has been an arduous last three years, therapies 5 days a week, multiple codes, flight for lifes, surgeries, complications, repairs, and back round again BUT our Hope For Our Hearts is Found in Christ. We know in faith God will use this page to reach out to others as HE sees fit…
Friends, if you take away anything, take away our message that God is so abundantly good, so worthy of praise, and we thank Him daily for the blessings that are our children!
Though we have all faced much in our lives our testimony stands that our Hope For Our Hearts is not dead as our God’s Not Dead He’s Surely Alive!!!
One other aspect of our page that we are seeking is for posting/receiving prayers and daily encouragement through scriptures and testimonies to our spirit family and friends and other heart families. So please feel free to comment and share away!
There you have it brothers and sisters… please help us pray for our most precious daughter and all the other families affected by CHD and let’s bring some new and added awareness to a great cause; our little Christmas Miracle!
We thank you in advance for your support of our beloved <><!
Thanks and God Bless as we strive as, The Landis Tribe of 8, to Live Agape ❤
“Most importantly of all, love each other as if your life depended on it” (1Peter 4:8, NLT).
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