Leah Grace Jarmer

Leah’s Website http://leahgracejarmer.blogspot.com/

In July 2008 we found out we were expecting our second child. On November 12, 2008, at my routine 20-week ultrasound, we learned that our baby girl had several complications. The ultrasound revealed Leah had a cleft lip, closely set eyes, and a very rare but severe brain malformation called Holoprosencephaly (HPE). My doctor also suspected Leah had Trisomy 13. He said, regardless of the exact medical condition, her brain most likely did not form properly enough to allow survival. It was unlikely I would carry Leah to term. If we made it to term, she most likely wouldn’t survive birth. And even if she survived birth, she would only live minutes, hours or days. We were completely heartbroken and overcome with grief that our unborn baby girl was very sick, and may not reach our arms alive. We loved her so deeply, and at that moment begun surrendering our plans for Leah to the Lord. We realized it was His plans alone that would come to pass in her life.

We declined amniocentesis, because having a more accurate medical diagnosis didn’t change the severity of Leah’s condition. The doctors predicted her life would be short, and we didn’t dare risk making it any shorter through the potential risks of the test. Our doctor advised us that the main reason most parents choose Amniocentesis is to decide if they will continue with their pregnancy. This decision had already been made in our hearts years ago, as we believe that each precious life begins at conception as God forms each child within his mother’s womb. Terminating my pregnancy and thus ending Leah’s life prematurely, by our own hands, was unthinkable! We believed Leah was a gift to our family and that our sovereign God would write her story, beginning to end. We fully understood and grasped the reality that without God’s healing, Leah would die. But for God’s glory, first, she was going to live!

On March 19, 2009, we went straight from our 38-week appointment over to the hospital for emergency induction. I was induced because Leah’s amniotic fluid levels were becoming dangerously low. In addition, my blood pressure was getting too high. During the several hours of labor, we held our breath as we watched Leah’s heart rate drop with each major contraction. Our deepest hearts desire was to meet Leah alive. We were even prepared to have an emergency C-section, should my doctor think that would allow her to survive birth. After learning about how well my first delivery had gone, he was cautiously optimistic that Leah’s could be a vaginal delivery as well. We had focused much prayer on Leah’s upcoming delivery, as we knew the shorter and easier the delivery, the better chance Leah could survive birth. Once it was time to push, her head was already crowning. Within seven minutes, and two pushes, Leah was born crying!

Leah Grace Jarmer was born on March 20, 2009 at 2:57pm. She weighed 5 lbs. 11 oz. and was 18 _ inches long. She had blue eyes and strawberry blond hair, just like her Mommy. She was born crying and breathing on her own – answers to two of our most fervent prayers. Her first APGAR score was 8, and she was already doing so much better than we were told to expect. She spent the first 30 minutes of her life being closely monitored by a NICU team in our birth room. My first thought when I finally got to hold her was that she was so beautiful! Within her first hour of life, we invited all of our immediate family into our room to meet Leah, as she remained cradled in my arms. Her breathing rate and oxygen levels were starting to drop, so they wisked her off to the NICU. My husband Luke never left her side. It was several hours before I could go and join them, although it felt like an eternity. As I waited, I felt the deepest sense of thankfulness for all that I had already gotten. I’d gotten to hold her, kiss her and tell her I loved her. She had overcome such immense odds to simply reach my arms alive. I felt like if this was all I was meant to have with her, I would choose to accept that. But at the same time, my heart hoped and yearned for so much more!

Upon birth, the Neonatologist informed us he was quite certain that Leah's body did not look like a typical baby with a chromosomal disorder. The tests came back in the coming weeks, that Leah's chromosomes were in fact normal. At that point, HPE, would be her complete, yet still very adverse, diagnosis. Leah's brain malformation had been diagnosed by MRI as Alobar, which is the most severe type of HPE. The diagnosis itself didn’t translate to an exact prognosis for Leah’s survival. Doctors gave us a general timeframe of 0 –6 months. They said that her length of survival would depend greatly upon the specific degree of challenges her body faced. They shared honestly with us that Leah faced very intense and severe challenges, and her life would be on the shorter side of that range. Again, we were told that most likely Leah would only survive a few more days. We continued to love her unconditionally, accepting her challenges and desiring to give her the best care possible for her entire life.

Leah spent her first 9 days of life in the NICU. The doctors ran tests, including an MRI, EEG brainwave seizure study, and an ultrasound of Leah’s brain. Her HPE diagnosis came to include the following challenges: severe seizure activity, lack of pituitary function, inability to control her body temperature, Diabetes Insipidus and she would require a feeding tube. The NICU staff was amazing, but they reached the point in Leah’s care where there simply was not anything additional they could do to help her. Her condition could not be treated, and her seizure activity was increasing daily beyond a healthy level. They predicted she could survive only a few more days due to the stress from the seizures. So, the NICU made plans to send Leah home on Hospice care. We could bring her home and continue the exact same level of care, including feedings and medications that were helping to manage some of the milder symptoms. We wanted to be with Leah for the remainder of her life, in the comfort of our own home.

On March 29th, Leah came home! It was wonderful seeing the love between big sister Kyla and our little Leah. Luke was able to be home with us the whole first week, which was a good thing because Leah kept us plenty busy. For the next three months we felt blessed to have the opportunity to care for Leah. We excitedly put together her nursery and thoroughly enjoyed making her a part of our lives. She went many places and impacted everyone she met. Leah loved church and all the attention she received from our friends and family. My favorite memory was taking both my girls to the park and library together. Kyla enjoyed giving her sister “baby hugs and baby kisses”. Leah’s favorite position was to be snuggled up against her Mommy’s shoulder, which would quickly put her to sleep. We cherished her every smile, every hiccup, every yawn and even every cry!

Caring for Leah was very intense, but a huge privilege as well! Her daily schedule included tube feedings every three hours around the clock. Leah received medication to help control her seizures (but several hundred a day was still very intense), as well as medications to replace the hormones lacking in her body, and she received a very large dose of love from Mom, Dad and big sister Kyla daily. Her seizure activity increasingly interrupted her sleep, so she was awake much of the day and night, needing our love and care. God gave our family the strength to endure and function on very little sleep the first two months. Hospice nurses came for an hour visit once a week, to simply check her vitals and share their amazement at how well Leah was doing, considering her challenges. The final month of her life, we were able to hire a nurse to come in four nights a week to allow us to get some long overdue sleep. Everyone was surprised that in her own way, Leah was thriving. Leah was still Leah, with all her challenges, but she was growing and responding to our love. I am so glad that I decided to pump and feed Leah my breast milk. She nearly doubled her birth weight in three months, growing to just over 10 lbs. We joked that with all her baby chub, it was obvious that one challenge she did not face was lack of nutrition. Leah was so easy to love, and we were honored to have the chance to realign our lives to care for her.

We had prayed earnestly for Leah’s healing here on earth, but God had a different, yet sovereign plan. On June 27, 2009, Leah went to Heaven and was eternally healed! She took her last breath peacefully in her Daddy’s arms. There was an instant acceptance in my heart that Leah was with Jesus and with that reality God gave me a very real sense of peace. I also learned that it is possible to experience both joy and sorrow at the same moment. Even in Leah’s death, God’s goodness and provision were clearly seen by our family. We truly believe Leah’s survival for ninety-nine days was our miracle! She had a greater impact for Christ in her brief three months than most people have in their entire lifetime. We are so incredibly proud of our “Leah Sweet Pea-Ah”. Through our year-long journey with Leah, starting with her conception, pregnancy, birth and life, we learned to trust God day by day, and moment by moment. We learned to cherish our daughter, and accept the gift of her life, without knowing how long we’d be allowed to enjoy her presence. We learned that with God, it is possible to survive saying goodbye.

“Goodbye Leah. I’ll always love you. I’ll love you here, and I’ll love you there!” These were Kyla’s final words to her baby sister, the night before Leah went to Heaven. None of us knew that the very next morning Leah would be “there”.

In receiving a poor prenatal diagnosis, there is always room for hope! In both caring for our special needs child and upon saying “Good-bye” to our precious daughter, we never gave up hope! I’ve recently read an impactful book called Holding On To Hope, by Nancy Guthrie, in which she takes us by the hand and guides us on a pathway through our pain – straight to the heart of God. I believe the subject of one's hope is what can bring strength and comfort in the very face of despair and seemingly hopeless circumstances. With our faith, trust and hope placed firmly in Jesus, we eagerly await our reunion with Leah in Heaven.

"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Romans 8:38-39

The Jarmer Family – Luke, Kristine, Kyla & Always Leah
Kristine147@hotmail.com
(Please contact us if you are in need of support)

If your child has recently been diagnosed with Holoprosencephaly, please visit the support group, Families for HoPE at http://www.familiesforhope.org/

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.