Katie and Mark Robinson learned at their eighteen week ultrasound that their unborn little girl was diagnosed with a congenital heart defect (CHD) called Tetralogy of Fallot. Although surprising and stressful at the time, the two of them gained a sense of strength for their little girl that they didn’t know they had. They began researching hospitals and surgeons and eventually decided to seek care from the University of Michigan C.S. Mott Children’s Hospital. Throughout the next few months they attended many appointments and meetings with doctors, learning as much as possible about this little one’s heart. Knowing that there would be at least one surgery in the first year of her life, but not knowing when, was very worrisome to the entire family.
On November 8, 2016, Katie and Mark received the greatest gift of all; their little warrior and perfect baby girl, Elizabeth Shirley Robinson. Just hours after she was born, her medical team began running tests, allowing them to evaluate her and get a real understanding of what her heart looked like. After what seemed like weeks, but really only days, medical professionals gave Katie and Mark the okay to take their sweet little angel home. They returned ten days later for a “check-up” that resulted in finding out Elizabeth was unable to go home until she had surgery.
November 22, 2016 was the first time that this sweet little baby girl was wheeled back for surgery, the most terrifying feeling that new parents could ever feel. Elizabeth recuperated quickly, spent her first Thanksgiving in the hospital, and got to go home the following week. The next six months Elizabeth spent her days eating, sleeping, giggling, going to church, helping her mama train Pilates clients, watching sports on TV with her dad, taking her first plane ride for a vacation, and attended a handful of doctor’s appointments. She was a happy baby girl that captured the heart of everybody she met with her rolls and sweet laugh. She would also talk your ear off once you got her started.
Elizabeth’s CHD required another open heart surgery to fix a sequence of four things wrong with her heart, Tetralogy of Fallot is:
A heart defect that features four problems.
-a hole between the lower chambers of the heart
-an obstruction from the heart to the lungs
-the aorta (blood vessel) lies over the hole in the lower chambers
-the muscle surrounding the lower right chamber becomes overly thickened
As scary as this situation was, the doctors assured both Katie and Mark that it was a “common” procedure and that Elizabeth would have surgery and get right back to her normal life.
On May 8, 2017, for the second time, Katie and Mark handed their little girl over to a team of doctors that were preparing to perform open heart surgery on their little girl. As they sat with their family in the waiting room over the next few hours, getting updates from the OR that all seemed positive, there was no better feeling than seeing her surgeon walk in that room with a smile on her face saying all went well. Shortly after that conversation Katie and Mark got to go back and see Elizabeth, but not too long after they got in the room they were notified that there was a little too much pressure in Elizabeth’s chest. This meant they were going to have to open her chest back up and leave it open for a couple of days. This isn’t uncommon with open-heart procedures, but certainly was not comforting to her parents. The next two days went well, Elizabeth got her chest closed, started waking up, and showing she had healthy lungs thus able to come off the ventilator.
Thursday, May 11, 2017, is the day that will forever be the worst day of Elizabeth, Katie, and Mark’s life. That afternoon, they extubated (took her off her breathing machine) Elizabeth, she was enjoying her day listening to her favorite YouTube videos but started getting hungry and fussy in the later part of the evening. The nurse was in the process of placing a feeding tube, and that is when the life of this sweet little girl changed forever. She was agitated at the tube that they were trying to stick down her nose and got very upset—for a reason that nobody understands Elizabeth went into cardiac arrest. With two nurses by her bedside, her mom, dad, grandma, and grandpa in the room, Elizabeth’s heart blew out. The following hours were the longest hours of Katie and Mark’s life, standing in the hallway outside Elizabeth’s room in the PICU, they saw doctors and nurses running from all directions trying to save their little girl’s life. A social worker got them into a room away from the chaos, and provided them with updates as the doctors were trying to get Elizabeth to a stable enough place to make it through the night.
Hours after this tragic event took place and the situation was controlled, one of Elizabeth’s doctors asked to speak with Katie and Mark alone. Sitting in a consultation room, this doctor spoke words to these two that are every parent’s worst nightmare, saying that they were extremely worried about her and unsure if Elizabeth would survive. Unimaginable. Their little girl was now in the hands of God, and that is where she will forever stay.
Elizabeth sustained a free wall rupture to the right side of her heart, an event that in 95% of known cases, results in death. She also was injected with what is called an interosseous infusion. The infusion is used in lieu of an IV in trauma situations to get fluid to your organs. This IO was drilled into her right and left tibias. Unfortunately as the procedure was done the IO in her right leg dislodged, causing fluid to back up into her leg and she lost circulation throughout her entire right leg and foot. Not only had Katie and Mark just found out that their little girl was on life support, they were now being informed that Elizabeth had to have an emergency surgery on her leg to attempt to save both her leg and foot.
Over the next 72 hours, Elizabeth was monitored constantly. Through all the trauma and lack of blood flow to her brain, it was evident that she had sustained a brain injury however; the extent of the injury was unknown at this point. Just five days after Elizabeth coded, they took her back to the OR in hopes of repairing her heart and that she could come off of life support. Those five days were emotional, horrific, terrifying, and yet amazing days because Elizabeth was still with us.
The next challenge was her neurological status. The days following the open-heart repair brought new emotions; Elizabeth had a series of brain tests, CT scans, EEG monitoring, and an MRI. Saturday, May 20, 2017 the family of this little miracle received news that the extent of Elizabeth’s brain injury was very severe—a hypoxic ischemic brain injury that impacted the brain in all regions. Doctors then said that the results of the MRI show Elizabeth will likely never walk or talk and that her ability to perform intentional actions would be very limited. They gave a 50/50 prognosis that she would be able to breathe on her own, to eat, to track people and objects with her eyes, or be able to control her head. However, less than 2 hours after they got Elizabeth off the ventilator this time, she was taking a pacifier with her mama’s milk on the end! That was the beginning of the road to her “recovery”. Elizabeth spent the following three weeks in the hospital and is now home.
If you’re wondering about her leg/foot, we do have some amazing news! Her leg has recovered completely and she is actually moving her right leg more than her left! Unfortunately, Elizabeth has had to make trips back to the emergency room since returning home, thankfully for non-life threatening issues. She has started very intensive physical and occupational therapy, cranial-sacral treatment, and just recently started hyperbaric oxygen therapy. She is starting to get used to her new life at home. She has two parents that will always go above and beyond to get this little girl anything she could ever need. They are looking into second, third, fourth… really any opinions they can get, alternative options like stem cell treatments, and any research they can find that could potentially help their little girl. There is no explanation as to how this baby survived the events that she has been through; at the end of the day she is truly a miracle!
Elizabeth’s journey is just beginning, please join it. Please support this family to help their little girl get the help that she deserves to live a wonderful, happy life. If there is anything that you can take from this story, please share the word of the Lord. Katie and Mark truly believe that it is due to divine intervention and the reality that God has plans for Elizabeth beyond our imagination. Share her story, believe in her testimony, and know that she is fighting to make you a believer in miracles!
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
- Steven Strawser
- Kami Miller
- Charlene McFarland
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