We traveled back down to Riley last week to meet with one of Haven’s doctors regarding the results of her autopsy. That evening we also attended a Memorial Service at Riley for the children who have died recently. We were thrilled to see some of our nurse-friends and other hospital staff who attended the service to honor Haven. We were reminded that Haven has not been forgotten by those who cared for her at Riley. It was so encouraging to see that she remains in the hearts of many people.

Hearing the results of Haven’s autopsy was an encouraging and uplifting event for us. We learned that the cause of her death was a blood clot in the artificial shunt that was placed in her heart during her first surgery. Because this shunt was the only route for blood to get to her lungs, the clot ended her life very quickly as we witnessed. They could tell from the autopsy that the clot had formed quickly and was not a clot that had been forming over time and had been overlooked. Because of the nature and cause of her death we are not tempted to blame ourselves or the doctors for overlooking something or for making a mistake. We knew before her surgery that a major cause of death in children who have undergone her heart surgery is blood clots in the shunt. They take many precautions to prevent it, but many times the blood does not react properly to the artificial vessel and it clots, cutting off blood flow. When this happens, the children are not able to be resuscitated as in Haven’s case.

The most surprising thing about the results of her autopsy to us was that the rest of her body was really in better shape than was suspected. As we all knew, Haven’s body had many struggles and many different organ systems were not functioning correctly. Everyone’s first reaction to her delay in progress was that her body had gone through a lot of shock from heart surgery and ECMO and that she needed more time and assistance in order to get stronger and get better. We spent the first half of her life trying to get her stronger and sent home.

After months had passed, we all started wondering if something else was going on that was causing her to not get better. They started looking for genetic and metabolic disorders. None of the tests showed that she had another disorder, but her symptoms were still very suspicious.

As Haven’s condition became more critical with her fluid imbalance and the possibility of dialysis, we were presented with the option of choosing to withdraw medical support and end Haven’s life. That choice was never an option to us. We certainly hated to see our little girl fighting such a hard battle, but we knew that it was our job as parents to protect the life inside of her failing body. We spent every hour of our days cherishing her life and fighting along with her. Because we were always by her side, we knew that she recognized our voices and responded to us. We knew that she could focus with her eyes and recognize familiar people and objects. We also knew that she was a happy baby and that we were able to keep her pain under control. Although we were always given the decision regarding her life, we endured many different opinions regarding her treatment. We did not speak much of this struggle on the website as we wanted all of you to join with us in hope for Haven and in reverence of the life that God gave her.

We decided to continue to support Haven’s life as long as she allowed us. That is when we decided to put Haven on dialysis. That was a major turning point for her. She immediately started shedding fluid and everything else started looking better as a result. After a couple weeks of dialysis, Haven had some of her most stable days ever.

As you are all well aware, the timing of Haven’s death was a surprise as she appeared to be on an upswing. Not knowing the cause of her death, we assumed that her body systems must just have been in such bad shape that everything just gave out. The autopsy showed, however, that this was not the case. Her organs were not in the best condition. They showed many signs of the stress her body had gone through, but they were not the cause of her death, nor did they appear to be affected by any other sort of disease or condition.

After hearing these results, we were encouraged because we felt that we were right in thinking that she had a chance at recovering to a more stable condition and getting better. We feel that we were right in not giving up on her, but making medical decisions that gave her body a chance to heal. We still knew that Haven’s chances of recovery were very small and would take many months. We still knew she needed two more open heart surgeries before her heart would be repaired. But we also knew that we would stand by her each day that she had life on this earth. And that’s what we did, and we feel very good about that.We have so many people to thank for keeping our daughter alive and happy for as long as she did. We were blessed with a fabulous hospital and very intelligent and experienced doctors. Our nurses were amazing and spent almost as much time taking care of us as they did Haven. Other hospital staff members were also very instrumental in answering our questions and helping us advocate for Haven. We will always remember these people and pray for them as they continue to lead other families on this journey every day. And of course we thank our friends and family who continue to love and support our family in so many ways. THANK YOU!