John and Mimi McDonald were elated when they found out their family of four would soon be expanding to five. After miscarrying twice before, Mimi was really excited when she first heard the baby’s heart beat  at eight weeks gestation.  Little did the McDonalds know that their developing baby would have a serious congenital heart defect.    

As an active mom, and a dance instructor, Mimi kept busy during her pregnancy. What joy she felt as they anticipated the arrival of their long awaited third child. At Mimi’s 20 week check up John and Mimi learned they were having a baby girl. They were also told that everything checked out perfectly, a blessing Mimi, having experienced her own heart problems, did not take for granted. With that news, John, Mimi and their two children, Jensen and Ellie, continued to prepare for the arrival of their sweet little girl.  

But then a few weeks after the ultrasound Mimi couldn’t shake the feeling that something was wrong.  She worried that something was wrong with the baby’s heart.   In spite of being told everything looked perfect, she decided to get a fetal echo done like she had with her other two children. Not worrying too much about it, she insisted her husband stay at work during the appointment. Mimi had had many fetal echoes in the past, all resulting in good news. During the echo, she glanced over at the screen and noticed that one side of her baby’s heart was significantly larger than the other. She thought it was probably just the angle of the probe, and continued watching the screen as the technician gathered the information for the pediatric cardiologist. Minutes later after watching the baby’s heart from all angles, the image  did not seem to change. Mimi casually commented that one side looked so much bigger than the other. The technician said nothing, and Mimi felt her heart sink, a feeling she would be becoming very familiar with in the weeks and months to come. She made another casual comment about the size, and detecting Mimi’s understanding made the comment, “I’m not going to lie to you, it’s not normal.” As Mimi began to cry her pediatric cardiologist came into the exam room; which was unusual.  When she saw his face she knew he had bad news for her. She said, “The left side is really big.” He said, “Yes it is, let’s sit down and talk about it.” The next ten minutes were a blur to Mimi. The only thing she heard was, “Your daughter will need a heart transplant.”  

The following week at a follow up echo, the cardiologist saw no changes in her heart function. The McDonalds continued on, trying to prepare for life with a transplant baby. They met the transplant surgeon at Seattle Children’s Hospital, and began reaching out to other parents who have children with transplanted hearts. Mimi, having been a recipient of a human valve donation while in her teens,  spent time as a young adult advocating for organ donation, but she never imagined how much closer to home the subject would come. Mimi soon discovered a community of parents with children who were heart recipients.  She benefitted from contact with other families that had experienced similar things and gathered strength from their experience. One of the families they met introduced them to the Erika Kate Foundation.  Knowing they were headed down this path, they contacted the foundation.  They were surprised how caring and understanding they were.  They were so impressed that out of their grief, another family had started a foundation to benefit people in similar  circumstances They started to feel comfort in learning that such transplants have been done before, and that such wonderful people had once been in their shoes.

The McDonalds  would have good days, and bad days, and Mimi felt like a ticking time bomb. Two weeks after they found out about their daughter’s heart, they went to another fetal echo appointment. Mimi needed to be closely monitored to know if induction was required to save the baby’s life. More bad news was on the horizon. Their babies heart tissue between the two chambers was beginning to bow do to the fact that one side was working so hard to compensate for the dysfunction of the other side. The pediatric cardiologist was very concerned and told the McDonalds they might be facing fetal demise (a miscarriage). After just starting to accept the fact that their daughter would need a new heart, they were told she might not make it that far.  John and Mimi were crushed again, they felt strongly in their hearts that their daughter was supposed to be part of their family.  

Every time Mimi felt the baby move she knew it was a gift from God. Week after week Mimi and John would receive the news that their daughters heart was worsening. The entire left side was so dilated that it was causing so much strain on the right side of her heart. They decided to name her Mia Marie so they would have a personal relationship with her during this time. Mia’s heart remained strong despite medical expectation that it would not.  

When Mimi was 39 weeks pregnant her doctors decided to induce her so everyone on her medical team would be ready for the delivery of a baby with such critical health concerns. Plans were made for Mia to be transferred to Seattle Children’s Hospital and placed on ECMO if needed. After hours of labor Mia arrived and was whisked promptly out of the room before her mom could even glance at her. As the medical team rushed Mia into an adjacent room, Mimi was preparing for the worst as she did not hear her daughter crying. Minutes later, a nurse came in and informed John and Mimi that their daughter was stable and had quite the lung capacity. Feeling relieved, Mimi and John couldn’t wait to  meet little Mia, the newest addition to their family. Mimi was able to hold her daughter for only a couple of  minutes before the team  transferred Mia to Children’s Hospital.  Mimi fell in love with her daughter, and was so proud to be her mother.  Mia took an ambulance ride with her dad to Children’s hospital, while Mimi stayed behind, recovering from labor. 

To all of the doctor’s surprise, Mia was more stable than they had anticipated. They started talking about trying other treatments to see if her heart would recover if the aortic valve was repaired. They were elated that there might be a possibility that her heart could recover function. At two days old Mia underwent a balloon valvuloplasty to expand her badly malformed aortic valve. Her heart responded well to the surgery, and then it was  a waiting game to see if the left side would start contracting again without the extra blood flow pooling in. Sadly Mia’s left side never did recover function and John and Mimi found themselves looking down the long road of transplantation. They had been mentally preparing for weeks that their daughter’s heart would need to be replaced, and were devastated when the hope that she might get to keep her heart disappeared. 

Mia was listed for transplant, and underwent a hybrid operation on her heart  to help sustain her life until the gift of a new heart would come. The hybrid was successful, and Mia seemed to be stable. The plan was for Mia to wait for her new heart at home. She was discharged a week and a half later to begin the wait. Every member of the family felt very blessed to be together, and Mia was alert and happy while she was there. Mia was able to get comfortable with her brother and sister, and she met members of her extended family as they came in for quick visits to see her. The joy was indescribable. Three days after being home Mia started laboring to breathe. Mimi had been monitoring her health at home with a monitor provided by the hospital, and her numbers were perfect. Late in the evening on her third day being home Mia’s heart began to fail. Mimi and her mother rushed Mia to their local ER, and then Mia was flown back to Children’s Hospital.   

Broken hearted, Mimi and John accepted the fact that they would now be waiting for her new heart at the hospital.  The family had already been separated for a month, and there was no telling how long it would be before mom could come home.  Their other two children struggled at home without their mother, and Mimi had to face the challenge of trying to heal the hearts of her other children while being at the hospital for Mia.  Apart from the emotional stress of all of this, they were also having financial strain.  John’s company was going through a financial crisis which forced John to go without his salary.  The Erika Kate foundation stepped in and covered the mortgage during the month that John had no income.  They also extended much needed assistance by mailing them gas cards.  They were very generous and alleviated an immense weight the family was bearing.    

As of this writing, Mia continues to wait for her new heart.    She has good days and she has bad days, but she is a fighter.  The McDonalds can’t wait for the day when their daughter will be given a second chance at life.  This is the most difficult trial they have ever faced, and need all the help they can get.  They are so appreciative of the EKF and for all their family and friends who have stepped in to help out at such a tough time.  Mimi and John pray for the family of the child that will give Mia the ultimate gift- a chance at life.    Mimi keeps a blog of Mia’s complete with accounts of Mia’s progress and stories of how the family is coping with their situation.  Visit www.mcdonaldfam.blogspot.com to learn more.