At 20 weeks gestation, Meredith’s parents, Kristen and Chris, went to their doctor’s appointment, and like many parents, were so very excited to find out whether they would be blessed with a prince or a princess. The news they were given would prove to be the most life changing and unimaginable any parents could ever hear. Chris and Kristen were told they would soon bring a princess into the world, and that her heart would be extremely sick. Meredith was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). The left side of her heart, both the atrium and ventricle, were not developing normally and that although medical advances over the years had proven successful in reducing mortality at birth, Meredith would have to undergo a series open heart surgeries, beginning just after birth, if there were any chance for her survival. Still, Meri would likely require a heart transplant at some point, if she survived. There is no known “cause” of HLHS; it is a genetic congenit defect.
Chris and Kristen took this information home and sadly began to accept the reality of their precious daughter’s future. They first had to difficult task of explaining to their sons, Broc, 8, and Maddox, 5, in language little boys could understand, that their baby sister would be born with a very fragile heart. They soon received a second opinion from doctors at Levine Children’s Hospital, which confirmed the HLHS diagnosis. The family began to educate themselves about Meri’s diagnosis, to weigh every possible option, and the potential outcomes with each. They put every single ounce of trust and faith they had in God, that they would make the RIGHT decisions, and that somehow they would be able to accept and live with His will being done. If it were God’s will for Meri to survive, Chris and Kristen knew she would. If God did not intend for Meredith to remain on Earth, if He must take her back home, then they knew they had to find it in themselves to accept that truth as well.
As days, weeks, and months quickly passed, doctors continued to keep a close eye on Meri’s heart, finding other unique developments that made her situation more complex. As Kristen explained, “every case of HLHS is different, so individual, it’s almost like a person’s fingerprint.”
In the time that had passed since hearing the diagnosis, Chris and Kristen’s hearts and lives had already been changed so much, they seemed like new people. The love and support that surrounded them was overwhelming, and the peace that had filled them gave them assurance that ‘what was meant to be, would be.” They registered themselves at Levine on the night before Meredith was born. They knew doctors had little, if any, hope for her survival. They held their heads up, they prayed, and spent their last night together with Meri in the safest environment she would ever be again.
Her labor was induced Tuesday morning, and Kristen didn’t ask for pain medication. Chris was at her side without fail, periodically sending group messages to family and friends with updates, keeping his humor, reminding their loved ones how beautiful Kristen remained, while we all knew the fear that must have been hiding underneath.
2:29 pm. Doctors immediately rushed Meredith from the delivery room, from her mother and father, and to the NICU for a full assessment; if she were to be a surgical candidate, time was of the essence. The doctors and staff must have been especially surprised at her birth, because later information revealed that they had no hope of her ever taking her first breath at birth, much less letting out her first big newborn baby cry!
5:00 pm. Doctors return to the room to discuss their findings with Chris and Kristen. What had seemed to be a small miracle to them, was quickly silenced, when they were told that there was nothing that could be done for Meredith, and that they should spend what time they had holding and loving their baby. They expected she would not survive through the night, and advised chris and Kristen to notify any family and friends who were not already present and wanted to see her, that the time was at hand.
Wednesday, September 17, 2014, the family packed up their 1 day old baby and left the hospital for home…with Hospice.
Every second, minute, hour, day that passed, every breath she took, every beat of her heart, blink of her eyes, every single movement she made, was loved, appreciated, observed, carved forever in the minds of her mommy, daddy, brothers, grandma and grandpa, aunts, uncles, cousins, friends who aren’t related by blood, but couldn’t be more like family if they WERE family. Because everyone knew, any second might be her last. After all, that’s what they had been told. She had been sent home to die. Although she was physically flawless externally, perfect eyes and nose, precious lips and ears, and all ten fingers and toes that every parent worries so much about, we all knew that it was what we couldn’t see that could take her away from us at any second. But every day that passed, every visit from Hospice that confirmed strong vital signs, made Chris and Kristen ask themselves, “What is happening? She 3 days, 4 days, 5 days old now!”
On her 5th day of life, and still going strong, fighting to prove she had a purpose here, and that maybe man didn’t know it all, her information was sent to doctors in Boston. Not long after, Chris and Kristen received a phone call from the cardiologist in Boston! Their lives were once again in a whirlwind of movement and emotion, only this time, they would be headed BACK to Charlotte, NC to readmit Meredith into the PICU where she would be placed on an IV infusion called Prostaglandin. The purpose of the drug would be to keep her patent ductus arteriosis (PDA) open, as this would be necessary if, again, her survival were God’s will. Meredith had already proven that it was NOT His will for her to go home and simply die, as doctors had previously reported.
On Sunday, September 21, 2014, Meri was admitted to the PICU and quickly placed on the necessary medications. As proven since 20 weeks gestation, nothing she does would ever be “simple” or
“ordinary,” and that will be a trait we all love about her. Meredith’s body did not respond to the Prostaglandin exactly as hoped, and she required mechanical ventilation, or a “breathing machine” to help her through the night. All the while, doctors in Boston were evaluating her for surgical candidacy.
On Monday, Chris and Kristen received wonderful news that Meri had been accepted as a patient, and that she would, in fact, undergo a “hybrid” heart surgery. This surgery is obviously very risky, and they were told Meri had about a 50-50 chance of surviving.
Today, Tuesday, September 23, Kristen, Meredith, and Chris are en route to Boston. Meri and Kristen will arrive by 11:00 pm, where Chris will be there waiting. As anyone can imagine, most people do not plan for events such as this, and especially expecting parents or new parents who just days before took their newborn home with a life expectancy of hours…maybe days.
Kristen and Chris have not asked for help, they didn’t have to. Their friends and family WANT to help them. A person does not need to be a parent in order to imagine the devastation and elation this family has gone through over the past few months, but especially in the past 7 days.
We want to help them through this, because we are humans, we can empathize, and one day, each one of US may need someone’s help too. Helping each other not only lightens the load on the person or people going through the situation, it also provides the one helping with a sense of peace, togetherness, and like they did something, no matter how large or small, to make a difference in another person’s life. In this instance, a life is being saved. That’s kind of significant.
Meredith has proven to us that God has a purpose for her. We don’t know exactly what HE has planned for her life. She may grow up and change the world one day, who knows? All we know today is that in 7 days, she has changed and affected too many lives to count.
Please consider helping in any way you can. You will never be sorry you did. Thank you so very much.
Education means everything! Learn about Meredith’s condition and the first of many procedures she will undergo beginning in the coming days.
Boston’s Rankings/Scores in Cardiology (see Norwood procedure/Hybrid):http://health.usnews.com/best-hospitals/area/ma/boston-childrens-hospital-6140270/pediatric-rankings/cardiology-and-heart-surgery
Treatment options for HLHS (see Norwood procedure, alternative Hybrid procedure):
- debra maxie
- Eclipse Engineering (Doug Taylor)
- Jeff Brown
- Jennifer Walker
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