Love First
By Melissa Einck
On November 1, 2016, in a routine ultrasound it was first suspected our daughter would be born with a heart defect. Additional ultrasounds confirmed suspicions, Molly would be born with Hypoplastic Left Heart Syndrome (HLHS).
We were heartbroken. At first we thought our baby had a death sentence. It caused great stress in our home. The next few months were spent making appointments and learning how to live with a medically complex child. But after doing some research and talking with doctors, we were hopeful our baby would have a good outcome. Twenty to thirty years ago, babies with HLHS didn’t survive; there was no option for them. But with advancements in technology, these children are able to have a fair chance at life through surgical intervention. With our daughter’s diagnosis, we learned to lean on God and our faith. Our church and community rallied behind us in prayer not only from the beginning but throughout her whole life.
We were referred to C.S. Mott’s Children’s Hospital in Ann Arbor, MI, for delivery and surgeries. Treatment for HLHS usually consists of three heart operations done during the first two years of life. The goal of these operations is to rebuild the heart so that the right side can be used to pump blood out to the body.
Molly Jo Einck was born on February 13, 2017, at 4:53 a.m. She weighed in at 7 lbs 3 oz and was 19.75 inches long. Ironically enough, Molly was born in the middle of heart disease awareness month, specifically in heart week.
Molly’s first surgery, the Norwood operation, was done when she was four days old. Molly had a typical hospital stay after surgery, eighteen days. She struggled with swallowing and sucking. She had a tendency to aspirate on thin liquids. We became acquainted with the NG feeding tube and were able to bring Molly home 21 days after she was born. Over the next few months, Molly continued NG feeds with some improvement on oral feeds.
Molly had her first heart catheterization on June 7, 2017, in Sioux Falls, SD. This was done to check her heart function in preparation for her next surgery, the Hemi-Fontan operation. The week before Molly’s scheduled surgery, it was confirmed she had a dairy intolerance. Surgery was postponed while we switched Molly’s diet. On June 30, Molly went into her second surgery, but during surgery a lymph vessel was injured. In order for the lymph vessel to heal, Molly needed to be on a low fat diet for the next 6 weeks. This didn’t leave us many options for feeding her since she also had to remain dairy free. Molly hated the formula and skimmed breast milk. This caused her to take a few steps back. We were finally discharged 13 days after this surgery.
Six weeks after surgery, we were able to remove some of Molly’s dietary restrictions and she began to take off! At six months old, Molly was finally able to take all of her feeds orally and no longer needed the NG tube.
Feeding Molly was the biggest stressor for me. I wanted her to take all of her feeds orally. I spent many days and nights crying over her not taking her bottle and having to put most of her feed in her feeding tube. Looking back, I would’ve given Molly a lot more grace. Taking a bottle was very exhausting for her and would tire her out so much. Once she was able to take her feeds by mouth, she was a happier baby, smiling and giggling more.
At Molly’s nine-month cardiology appointment they noticed her tricuspid valve started leaking. The purpose of this heart valve is to prevent backflow of blood into the right atrium. This was a concern and doctors were monitoring it closely.
Molly started to crawl on her first birthday. She also learned how to say mama and dada. She loved playing with Barbies with her big sister and saying, “I love you.” She was just the sweetest.
Then in December 2018, Molly caught adenovirus that put her in the hospital for a few days before Christmas. It was scary for us. She was placed on oxygen which made us realize just how fragile she was. A virus like this would be a normal cold for most kids but with Molly’s weaker heart, she had a harder time fighting off illness.
We made it home from the hospital the day before Christmas Eve. It was so joyous for us to have her home in time for Christmas. Unfortunately, we were not able to enjoy our regular Christmas celebrations with extended family due to Molly’s illness. We spent Christmas at home, together as a family of four. At the time, we didn’t realize it would be Molly’s last Christmas. Looking back, we are grateful to have had the extra time alone with her, enjoying the extra cuddles and making memories.
In January of 2019, we learned the leak in Molly’s tricuspid valve was to the point it needed to be addressed. On April 2, 2019, Molly underwent a valve repair at Ann Arbor, MI. A couple days after surgery, we learned the repair failed. The valve was still leaking. She was in need of another repair. After another surgery and a rough two weeks, we headed for home on April 16.
In the middle of May, we learned Molly’s second tricuspid valve repair did not hold, it was again leaking a moderate amount. If Molly’s heart didn’t start to show improvement, she wouldn’t be a candidate for the Fontan Surgery, the third and final surgery to remodel her heart. If the leak didn’t improve soon, the next plan would be a heart transplant.
On June 13, 2019, when Molly was 28 months old, we learned her heart was failing. A new valve was no longer an option, Molly needed a heart transplant. We were given a list of four transplant centers to research and choose from. After many conversations, hospital tours, and research, we chose to have Molly’s transplant at Children’s of Minnesota in Minneapolis. This was one of the hardest decisions in our journey by far.
On July 16, we sent Molly to the operating room to place a broviac line. This short procedure went well. This line provided a continuous flow of medication Molly would need through a small backpack she wore, allowing her to go home. Two days later we were able to go home but it was evident Molly wasn’t herself. For the next few days, she wouldn’t drink, eat, or sleep and she occasionally got sick. She was miserable. On July 22, Molly was officially placed on the heart transplant list. With Molly’s signs of heart failure worsening, we brought her back to hospital a couple days later.
In the hospital, Molly continued to be unable to drink, eat, or sleep. In the early morning hours of July 26, Molly took a bad turn. Her oxygen saturations were dropping and she struggled to breathe. Her body was shutting down due to working so hard. Her heart was overworked and failing. The medical team decided she needed to have stronger breathing support through a ventilator, allowing her body to rest while the machine took over the breathing work for her. We believed Molly knew this would be the last day she would be able to speak. Before she was intubated, she went around the room and personalized all of her I love yous to everyone there, including me, her dad, and her sister.
We were scared, so scared. We didn’t know if Molly would make it through the procedure or how long she would need breathing support from the ventilator. We questioned if she would be able to come off it. Molly’s medical team decided the next right step would be to place a Berlin Mechanical Heart. This machine would take over the function of Molly’s own heart since it was too weak to pump sufficient amounts of blood to the lungs and her body. The Berlin Heart pumps blood around the body in order to keep the brain and other organs healthy, allowing Molly to grow and get stronger. The plan was for Molly to have the Berlin Heart until the time she received her heart transplant.
On July 29, Molly had surgery to place the cannulas needed for the Berlin Heart. During the surgery, one cannula was placed in Molly’s aorta and one in her right ventricle. The cannulas came out her stomach to connect to the Berlin Heart or an ECMO machine. During surgery, the medical team decided to place Molly on ECMO instead of the Berlin Heart to give her body additional rest. The ECMO machine and Berlin Heart can be interchanged by clamping the cannulas for a short period of time and replacing them with the cannulas to the opposite device.
Over the next month and a half, Molly had many ups and downs. It seemed there were more downs than ups. Molly never gave up and always seemed to pull through whatever battle that was thrown at her. She was able to come off ECMO on August 9 and switched to the Berlin Heart. Molly was making great progress with this and was working toward being extubated to just a nasal cannula for breathing.
Then, on August 24, Molly was placed back on ECMO. Her little body just couldn’t handle the Berlin Heart any longer. Molly’s body was slowly disintegrating. She needed to be placed on kidney dialysis and she had an extremely large liver. On August 27 the team took Molly off the transplant list. They told us she was just too sick to get a new heart. She needed to improve before consideration for placing her back on the transplant list. By September 3, she had made slight improvements and was able to be placed back on the transplant list.
The first two weeks in September were hard for Molly. We knew Molly was terminally ill. We knew the only thing that might help her at this point was a miracle heart. We knew that Molly may not survive even with a new heart. Molly kept having setback after setback. We knew that if she did not receive her heart soon, she would die.
We did our best to keep life as normal as possible for our oldest daughter. She lived with grandparents while my husband and I were in Minneapolis with Molly. This time was so hard on each of us as we worked to juggle our emotions, fears, and faith. Trying to balance the needs of our oldest daughter and being away from home added more stress. Our family did everything they could to help us during this time.
We spent Molly’s final days at her bedside. My husband Mike and I didn’t leave her side other than to go to the restroom or eat. We laid with her for hours, crying and listening to Christian music with her. We prayed over her, asking God to send her a new heart. These prayers were heavy and hard because we knew for Molly to get a new heart that meant for another family to lose their loved one.
Molly was tired. Jesus welcomed her into His arms on September 17, 2019, at 7:59 p.m. Molly was so much more than a little girl with a heart defect. Molly’s life was inspiring, courageous, and full of love. Molly’s life, while short, taught many what matters most in life—love first. She fought so hard and showed many that you can overcome the biggest of obstacles. Molly carried her cross with amazing strength. This little girl brought so many people closer to God during her journey. Through her suffering, Molly inspired people to have faith, hope, and love. She truly was the hands and feet of Jesus.
Article first appeared in Volume 11, click to download past issues.