Please take time to read Emma’s story. It is a story of life, love, devotion, and above all faith in God.
Several months ago we received a prayer request for a newborn girl named Emma. She was born with serious heart defects and had to undergo surgery; sadly, this was only one of little Emma’s problems. We recently received an update from Emma’s mother as to her condition over a year later.
We think you will be so impressed by the courage of not only Emma, but the courage of her entire family. Please take time to read Emma’s story. It is a story of life, love, devotion, and above all faith in God.
Emma’s Story
PROGNOSIS...according to the dictionary prognosis means foresight or prediction of the probable course and outcome of a disease; the likelihood or recovery from a disease.
Many people lovingly ask (and we appreciate) ”What is Emma's prognosis?" Well here it is-she is very complicated. Her heart, believe it or not, is probably the simplest part of her. We have come to grips with and for awhile have known in our hearts that most likely with all of her complications and chromosomes effected we may not be able to have her with us as long and we have prayed for. It’s been almost a year now. Wow a year! I can't believe my baby girl is almost a year.
Emma has been re-hospitalized for I believe the 11th or 12th time now, this time from fever due to infections. She has had a second heart surgery and would have to have at least two more for a complete fixed heart, plus future surgeries for small repairs. She has dislocated hips that can only be fixed through a surgery as well. Her latest set back is not being able to control her body temperature, which is a neurological issue. She had seizures after her last heart surgery and is on preventative medication for this. She has hearing aids that help with her hearing loss. She has Coloboma in both eyes (significantly in her right eye). She cannot take anything by mouth and is fed by a G-tube button in her belly. Her head control is so-so, her muscle tone is weak, and she cannot sit up, but can roll from side to side. Emma smiles and will giggle from time to time.
Emma loves her brother and sister and responds the best with them. Tannis reads to her and Hailey will put make-up on if front of her and dance. Emma loves to snuggle and loves her "Nuky". Emma looks in to her Daddy's eyes longingly and likes to play with the "Little People" Daddy got her. Emma loves it when Mommy gives her a bath and snuggles her. And she loves her daddy's i-pod with special music he picked out for her. We love our Em and will cherish every single second with her and thank God everyday we are all home together as a family.
Shane and I know from her recent chromosomal findings that we will continue to love and protect Emma and enjoy her as long as she is with us and will continue to do so when she is gone. We pray for years, but only God knows, just like only He knows when it is our time for all of us. Emma has proven doctors wrong many times and has drawn people closer to God, more than I ever could have ever imagined.
Because of Emma new friendships have been made and old friendships have been made stronger. Because of Emma families have bonded closer. Because of Emma I have seen such courage and strength in someone so little that I ask myself how do I have a right to complain of anything when she is the one that has to go through so much?
It breaks my heart a thousand times to write this. I will continue to believe and have faith that God has a purpose for Emma as he does for all of us. I will continue to thank God for showing me what true faith and strength and unconditional love is. God is everywhere yes, but since Emma has been born He has been everywhere 10 times over.
God brought us to a fantastic hospital with amazing doctors and nurses. We feel so close to all of them like a big family and that is how we are treated. Emma has had and continues to have great care and love from Hope Hospital, Oak Lawn and we are and will continue to be forever grateful.
I love you Emma Kate! I pray that through God's help you can prove your "prognosis" once again wrong. Mommy and Daddy are so proud of you and love you so much!
Here is a letter from Emma’s great aunt who is close to the family and has been helping raise funds for their difficult times. It helps give a little more background on Emma’s situation.
My sister Mary Isenberger’s (Davis, Illinois) son Shane Schultz and his wife Jackie (German Valley, Illinois) had a beautiful little girl they named Emma Kate on June 9, 2009. She was born with many health issues, a hole in her heart, to name one, that was
made aware to them before birth. They knew then that they were going to have to pull their boot straps up and hang on tight, ask for lots of prayers and support from family and friends. With two older children (Tannis and Hailey) at home, their lives were going to change dramatically. Jackie, who ran her own home daycare would now have to close. The daycare would compromise Emma’s immune system. Shane, an EMT lost his job due to absenteeism. The family now spends more time at Ronald McDonald House and Hope Children’s Hospital in Oak Lawn, Illinois than anywhere. They rely heavily on grandparents to help take care of Tannis and Hailey and get them where they need to go.
In October of 2009, a fund raiser was organized by parents of Jackie’s daycare kids. It was held at the German Valley Fire Station. Friends, family and strangers came from all over. It was a huge success, but the funds soon ran out as Emma was still in Oak Lawn. Prayers were constantly going up for Emma and the whole family. Churches from all around, near and far have them on their prayer lists.
It was brought to my attention that money was needed to pay for their stay at Ronald McDonald House. The cost was minimal, but over time, it adds up, so my husband and kids and I were given the opportunity through the church I work for to participate in the Mission March held in Maquon, Illinois. We would collect sponsors for our march and meet in the Village Park early one morning. My personal goal was to collect $1,000.00. We collected over $900.00. The money was sent to Ronald McDonald House in the Schultz name to pay that bill. It covered what was owed and some was kept on account for future visits. Needless to
say, this account was soon exhausted. The Mission March will be held in Maquon again this August 21st. I am already in preparation to collect sponsors. We live 2 ½ hrs south, so we can’t be there for them in other ways. Emma requires round the clock care. Shane & Jackie are her soul caregivers. Shane still has no job and Jackie is a stay at home mom. They have no income other than what family & friends give them from time to time. They continue to this day making constant trips to Oak Lawn for care, hospitalizations and follow-up visits while staying at Ronald McDonald House. I had the privilege of visiting there. It is a wonderful
place! Hope Children’s Hospital is remarkable! The doctors and nurses there are very compassionate. They are like family. They take wonderful care of Emma.
In the meanwhile, my husband and I made a trip north to my niece Carrie’s (Emma’s Aunt) daughter’s college graduation party on May 30th and spent the night at my sisters when we first discussed the idea of creating a cookbook dedicated to Emma to once again raise funds for her care and her medical expenses. This excited me as I am “cookbook poor” (I love cookbooks and come from a long line of good cooks). That was when my sister Mary came up with the title “Heart of the Family”.
(Emma’s heart problems have been the main focus of her health issues and she is so heavy on our hearts and has touched so many.) That next week I contacted the cookbook company (Morris Press) that has published several of the area cookbooks and requested a kit. I set the goal of collecting 500 recipes from family, friends, and extended family and friends. Coming from a family that has 80+ immediate members, I knew this would not be a problem. My goal was to also sell 1,000 cookbooks. “Piece of Cake” I told myself and others!
We received an invitation to Emma’s 1st birthday party for June 12th, so once again we took a trip up north taking Emma’s great-grandparents (Don and Audrey Benson ages 87 & 85 and great uncle Larry and great aunt Sharon) with us. By God’s plan things were falling into place. The cookbook kit arrived just in time to make copies of recipe collection sheets, advertising posters, advance book sales receipts and news release forms to distribute at Emma’s party and get opinions from other family
members about the book. My sister Mary and I made the announcement to both sides of Shane and Jackie’s families about the project, setting the deadline for recipe submission at June 30th. Everyone was excited about it and Shane and Jackie were very grateful. Before I knew it, recipes were arriving by mail, e-mail, facebook and in person from all over, even Emma’s doctor and nurses submitted recipes.
In the meantime, I worked on the personal pages of the cookbook. Emma’s mom, Jackie sent down copies of articles, bible verses and good wishes they had received over the last year. This book is about Emma and her fight to stay healthy. Our goal is to raise funds for her care and medical expenses, but to also make aware the bond and love this family has for each other and the strong faith in God that each of us have. Without God, faith, love, family, hope and prayer, there is nothing. There is nothing else but these things to keep Shane, Jackie, Tannis, Hailey, Emma and each one of us going.
525 recipes were submitted. We had exceeded our goal! By July 9th, the rest of the cookbook came together and everything was sent to the company. Emma’s “Heart of the Family” hard-cover, 3-ring binder cookbook is rose in color, a large heart in the center with a lot of other hearts coming from it. It is packed full of 525 diversified recipes. The eight category dividers are in pastels and the pages are trimmed in bows and hearts. The personal pages have Emma’s precious picture on it along with some of the bible verses and good wishes that were sent to her and a picture of the whole family at Emma’s first birthday party followed by the letter Jackie wrote to Emma that includes her prognosis. It was confirmed by e-mail on July 12th, just one month from when we announced the project, that the cookbook information had been received by the company. Since then there’s been a lot of buzz about it within the families and around our hometowns. Everyone, even my great nieces and nephews are anxiously awaiting the arrival of Emma’s cookbook. The books are expected to arrive by September. We have several cookbooks already reserved by many and a special account has been set up at my local bank, the Bank of Yates City, Yates City, Illinois for all of the proceeds from the cookbook and any donations. Checks can be made out to “Family and Friends for Emma” and sent to Janet Windish, 620 Knox Road 2150 East, Yates City, Illinois 61572 with your order. The cost of the book is $15.00 each. Please add $5.00 for shipping.
I am Emma’s great aunt. I feel very blessed to be a part of this cookbook. God continues to do good work in my life. He is my rock! He does good works for all and for the good of all. We are not to understand why things are the way they are, but I know this, Emma has touched the “hearts” and lives of more people than she will ever know. Through her, we have strengthened our faith and our bond with each other. We have been blessed by the life of Emma Kate Schultz in so many wondrous ways! God wants us to be in constant prayer. Yes, and I am for Emma and all that are involved in her precious life. Emma is beautiful! She is one of God’s children, His creation. My love for Shane, Jackie, Tannis, Hailey and Emma is great, and my love for God is even greater, for through him all things are possible. My family and I will continue to support Emma and her family as long as it takes in every way possible by the grace of God and through Jesus Christ, our Savior.
”Trust in the Lord with all your heart, and lean not unto your own understanding. In all your ways acknowledge Him and He shall direct your paths.” Proverbs 3:5, 6
After we read the letter from Emma’s mother, we responded and asked her to answer a few more questions we had. Following is the letter she wrote back to us with her responses:
At our 20wk ultrasound for Emma it showed there were 2 major holes in her heart; a hole separating the upper and lower chambers and a hole separating the right and left chambers. This basically means there was one big open hole in her heart mixing all the oxygenated blood with the non-oxygenated blood. We were told her aorta was a little narrow too. At birth she was diagnosed as having AV canal defect with sub-aortic stenosis.
There were no problems in pregnancy; I felt great and Emma, other than her heart, seemed perfect. She was born at 39wks.
Originally our Freeport OB doctor referred us to Rockford Memorial because they could not get a very good picture of Emma's heart. The Rockford doctor, Dr. Maloney (or Malone I can't remember now) said that Emma had low set ears, sandal gap toes and a heart condition. She said she was almost positive Emma had Down syndrome and said it was not too early to have an abortion. We were in such shock and disgust that she would even say such a thing since we were just coming in for heart issues. She insisted on an amniocentesis to prove that she had Down syndrome, however, this test proved Dr. Malone wrong. Emma did not have Down syndrome. She (the doctor) still said Emma may not be viable for life. We said we would let God decide that. We immediately found doctors at Hope Children's Hospital in Oak Lawn by Chicago. There they gave us much hope and thought she just had heart problems.
We have been on an emotional roller coaster since. Emma was intubated (put on a breathing machine) at birth to give her heart a break. She was never allowed to drink by mouth and had to be fed through her nose. She had her first surgery at 30 days old to put a stint in her PDA and had pulmonary banding done to help with blood flow. She stayed in the NICU from birth till this surgery.
A few months later we found out she had 80% hearing loss in one ear and 50% loss in the other. They also found she had coloboma in both eyes. As a fetus her eyes did not form correctly so optic nerve damage was done. Her right eye may be legally blind; her left is not as bad. She lived at the hospital for the first four months of life and stayed home only a few weeks here and there. At four months old she had a G-Tube and reflux surgery, so then she would be fed by a tube directly into her belly. Even though she had some ability to swallow they wanted her to save her energy. To do over I would have pushed more oral stimulation because she has trouble swallowing her own secretions and I do not know if she will ever be able to take food by mouth. We also found out she was born with dislocated hips that will have to be fixed by another surgery at the end of this summer. This past March she had another heart surgery enlarging her aortic arch, taking off pulmonary banding and putting a loose band farther down on the pulmonary artery, taking the PDA stint out and attaching a conduit piece to Emma's aorta for better blood flow.
Emma has been on and off of O2 as needed. For living most of her life in the hospital she is much delayed. After her last surgery she had some seizures, which doctors feel was due to her electrolytes being off so much. After heart surgery it is important for the body to loose extra fluid. Medication is given to "dry" the body so too much fluid is not retained and doctors are able to close up the chest. By doing this it can cause the body's electrolytes to be off. Emma had an MRI done and they found that her corpus collosum is a bit thinner than normal and her brain appears to be on the smaller side, which can happen to an organ when it is not being used and from being chronically be sick.
Emma spent a total of 9wks home her first year of life. She was air lifted 4 or 5 times now, I loose track, she has been hospitalized 13 times.
Emma cannot sit up yet at 13 months of age. She rolls over but her muscle tone is very weak.
Her next heart surgery will be next spring sometime. She still gets fed by a feeding tube in her stomach. She has 3 therapists that come once a week and 2 that come once a month. We have recently found out that she has neurological issues with controlling her body temperature. She can be as low as 94 degrees and up to 101.0 without being sick. This makes it hard to know if Emma is sick or not. When Emma is home, Shane and I are the only ones that take care of her. We have no nursing care at this time. We take turns staying up with her in the night, .ready to suction her if she coughs or give her O2 if she needs it. She needs 24 hour care. We are in the process of getting nursing care, but like anything with the state this takes time-way too much time.
Her last hospitalization was last week due to a regular virus. She was in the hospital for five days. Her fevers were controlled by Tylenol, Motrin and cool baths, but on the third day nothing would help. Her temp reached 106.1 in the ER.
Emma's illness has been very hard. Before Emma was born I ran a daycare out of our home in which we loved, but were forced to close. My husband Shane lost his great job as a paramedic after using all of his FMLA. He has had no luck and we have had no income since April. We are suffering financially. We have been blessed by being able to stay at a Ronald McDonald House, which is right across the street from the hospital, every time Emma is hospitalized,. We have been blessed by help from friends and family. A benefit was held for us last October in German Valley and we were so thankful for this, but we struggle yet again.
Emotionally my husband and I have felt torn this past year. While our other two children Tannis (boy, 8) and Hailey (girl, 5) were in school my mother would stay with them and we would see them on the weekends. We were hardly ever all together. This got very depressing for a family that always did everything together. I miss my old life, my daycare, our family times, being able to go anywhere together as a family. I love Emma with all of my heart, but it is hard especially to see her suffer and struggle, but she is a fighter. She wears hearing aids in both ears and has been through a lot. We are overjoyed with the little things in life; a good wet diaper means she is not retaining fluid, a smile which is not very often, a day without a fever or a day she tolerates therapy without getting too winded or her heart rate not getting too high.
Our other children had a hard time at school last year. Both teachers would say they were more quiet than usual, not as involved in classroom activities. This broke my heart. I would cry so many times and question "Why God? Why us? Why did this have to happen?" I ate right and took care of myself. There was nothing I did different this pregnancy. I don't smoke or do drugs. How could I have such a sick baby?
We have had tons of support and have met many wonderful people at the Ronald McDonald House. We share stories and give advice. We cry together, pray together and give thanks together.
This experience has definitely made me see how I have taken life for granted. I look at things so differently and cherish every second I can spend with each child. We took the older kids out of school a couple of times to do fun family things and had them talk to counselors which helped, but being together helps the most.
They expressed that their fears were that Emma would die. How awful for an 8 and 5 year old to be scared that their baby sister was going to die. Those worries should only be what parents fear, and they have to carry such heavy burdens themselves.
This situation has brought our families and friends closer to God. We have met some great doctors and nurses at Hope Hospital who actually come and visit us. They brought Christmas presents to our family last year. We have become friends. We have had great opportunities to witness to others about having faith and staying strong; that God only gives us what we can handle and when we have no more strength to pray or go any further God carries us and prays for us.
I will be honest though; recently both Shane and I have felt very down. With Emma progressing so slowly and not knowing what her outcome will be or how long she will live or even if she will ever walk or talk or eat, it gets very depressing. We know God has a purpose for her as he does for everyone. We work with her a lot, but she is always so tired. We can't take her out in public very much due to exposure to illnesses. We see other one year olds playing and going places and it makes us sad and discouraged but we try to stay strong and keep the faith. We cry a lot and pray a lot, but most of all we love a lot. Tannis and Hailey love Emma so much too. They are such great helpers, but you can tell it saddens them that they can't play with her like they should be able to.
Thank you for your time; sorry to go on so much and jump around, there is just so much to tell.
God Bless,
Jackie Schultz
Since we at the www.prolifecorner.com began getting information for little Emma’s story, we have learned she has taken a turn for the worse. Please hold Emma and her family in your prayers.
If you would be interested in helping this young family in their time of need, cookbooks are being sold to raise needed funds for them. Here’s how you can get “Heart of the Family” the cookbook dedicate to Emma Kate:
Checks can be made out to “Family and Friends for Emma” and sent to
Janet Windish
620 Knox Road 2150 East
Yates City, Illinois 61572
The cost of the book is $15.00 each. Please add $5.00 for shipping.
What an inspiring story of
Sat, 07/31/2010 - 7:40pm — always pro-life (not verified)What an inspiring story of love and devotion. Everyone should help out by buying a cookbook! Not only will you eat well, you'll help a family.
Wonderful story.
Sun, 08/01/2010 - 1:52pm — Helen L (not verified)Wonderful story.
May the Lord bless and help
Sun, 08/01/2010 - 2:15pm — Dave (not verified)May the Lord bless and help Emma and her family.
Our prayers are with you.
Sun, 08/01/2010 - 5:34pm — Jessie (not verified)Our prayers are with you.
St. Gerard, who, like the
Sun, 08/01/2010 - 6:09pm — Rita D (not verified)St. Gerard, who, like the Savior, loved children so tenderly and by your prayers freed many from disease and even death, listen to us who are pleading for Emma.
We thank God for the great gift of Emma and ask him to restore her to health if such be his holy will. This favor, we beg of you through your love for all children and mothers. Amen
We must all keep our trust in
Mon, 08/02/2010 - 8:14am — Chris (not verified)We must all keep our trust in God strong. May the Lord be with Emma and her family.
Emma is a special gift from
Mon, 08/02/2010 - 9:11am — Maggie (not verified)Emma is a special gift from God.
"Everything is grace." St.
Mon, 08/02/2010 - 9:29am — INRI (not verified)"Everything is grace."
St. Therese of Lisieux, OCD
But sometimes it's hard to understand. May God be with Emma and I will be praying.
I am Emma's Aunt and want to
Mon, 08/02/2010 - 9:54am — Aunt Bee (not verified)I am Emma's Aunt and want to thank EVERYONE who is doing a part in helping Emma and the family out in any way. Emma is so strong and precious and my whole family is so dear to me. This story was so well stated and made me cry to no end. I knew all what was written in here, but still my heart aches daily for my family. God has blessed them in so many ways in the past year but still He wants to hear our prayers. Please continue to lift them up in prayer!
God Bless,
Aunt Bee
My family will be praying for
Mon, 08/02/2010 - 10:43am — Jeff (not verified)My family will be praying for Emma and her family.
My prayers are with you.
Mon, 08/02/2010 - 4:43pm — Mary Kate (not verified)My prayers are with you.
I am Emma's proud cousin! I
Tue, 08/03/2010 - 1:53am — Cousin Rach (not verified)I am Emma's proud cousin! I cried and cried and cried when I read this. She's is so strong and is the perfect proof of the amazing God we have! HE can put an infinite amount of strength in even the tiniest of us! <3 Love you Emma and my family.
May the grace of God be with
Tue, 08/03/2010 - 8:31am — Suzi (not verified)May the grace of God be with you Emma. Truly a life of great value to our hurting world. Emma is teaching us how to love.
God is merciful and gracious.
Tue, 08/03/2010 - 12:24pm — Great Aunt Janet (not verified)God is merciful and gracious. This is what He has been and is to Emma. I want to thank Pro-Life Corner for doing this story. Thank you to everyone for their prayers. Please keep them coming!
Emma and her family are in
Tue, 08/03/2010 - 2:03pm — kevin (not verified)Emma and her family are in our thoughts and prayers.
Our prayers and love are with
Tue, 08/03/2010 - 3:57pm — Susan (not verified)Our prayers and love are with you.
Special thanks to Prolife
Fri, 08/06/2010 - 1:27pm — mary isenberger Emma's Nana (not verified)Special thanks to Prolife Corner for doing this article. As a parent, you always want to teach your children to be strong & independent, but more importantly the Schultz's have learned to be humble & gracious & in acceptance of the many gifts they have received. They ask for nothing but our prayers but have been rewarded with so much more. Love, Hope & the utmost Faith in our Lord & trust in His plan. Thanks & God's blessings to all who continue to support & pray.
Our prayers are with Emma and
Wed, 08/11/2010 - 8:27pm — Miranda (not verified)Our prayers are with Emma and whole family!
Much love to Emma and her
Fri, 08/13/2010 - 1:24pm — Judy (not verified)Much love to Emma and her family. I shall pray for her too and pass this story along to others.
Emma is such a geat and
Sun, 08/15/2010 - 12:11am — Cousin Cyndi (not verified)Emma is such a geat and wonderful gift from god. Such a strong little angel. She is in our thoughts and prayers everyday. She has come so far and touched so many people it is amazing. I still wear the braclet from German Valley. Love and prayers to Emma and the whole family.
This story has really touched
Sun, 08/15/2010 - 8:03am — Bonnie (not verified)This story has really touched me more than you will ever know.. So many of us think we are having difficult times but nothing compares to what you are going through as a family.. You will always remain in my thoughts and prayers.. You are blessed to have such a little miracle.. She is a little princess who has an amazing mother, father, brother and sister... She has great love from everyone all over whether we have met her or not.. It is truly amazing how you can feel so close to someone you don't know at all..
Emma is such an amazing
Sun, 08/15/2010 - 11:40am — Sandy (not verified)Emma is such an amazing miracle! I have had the opportunity to get to know this family well, as we too, have a sick child who has been in and out of Hope Hospital and we have spent many months at the Ronald McDonald House with this family. We pray daily for sweet Emma and her family. You are amazing!!!! Much love~
We are so blessed to have
Sun, 08/15/2010 - 8:38pm — Jackie (Emma's mommy) (not verified)We are so blessed to have Emma in our lives. Because of Emma so many things have happened. My faith in God has grown to a level I never could have imagined. I used to think I could fix anything and thought I had everything under control. God showed me that HE is the ONLY one in control and I cannot not fix everything, but HE can. I have learned to put everything in God's Hands and learned to pray HIS Will be done. Emma has shown me what strength really is and that life really is worth fighting for. Thank you Frank and Chris for sharing Emma's story and thank you to everyone for so many nice and encouraging words. We are blessed to have such wonderful support and continued prayers..we will be eternally greatful. Love and God Bless, Jackie (Emma Kate's mommy) :)
ED: Jackie, you're welcome. Emma's story is a blessing to all of us here at the Pro Life Corner and to all of our readers. Your faithfulness to God and to each other is a shining example to all of us. Thank you for sharing Emma's story with us. We, and our readers, will continue to hold all of you and especially llittle Emma in our prayers.
GOD BLESS YOU ALL AND GIVE
Mon, 08/16/2010 - 1:45pm — Terry (not verified)GOD BLESS YOU ALL AND GIVE YOU THE STRENGTH TO CARRY ON. I KNOW THIS CAN'T BE EASY ON YOU BUT BE STRONG AND KEEP YOUR FAITH IN GOD. HIS WILL BE DONE. YOU ARE IN MY PRAYERS DAILY.
We serve a big and a mighty
Tue, 08/17/2010 - 5:50pm — Great Aunt Deb (not verified)We serve a big and a mighty God! and nothing is too hard for Him. He is the God who provides and He has perfect plans for Emma and her family. He is faithful and meets needs in abundant ways. Lord, keep watch between Emma and her family unitl I can see them, again. Always close to my heart and always in my prayers. Abiding and trusting in Jesus, Love Aunt Deb.
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