Alyssa's Story

My name is Kim Welch. I am a mother of three children, two of whom are living. ARPKD has had a great impact in our lives. In 1992 I had my first child, Paul. He was born at 36 weeks and had a very tough start. He only lived for 10 hours. ARPKD was the cause of his death. At that point in time it was the worse day of my life. One year later my oldest daughter Amanda was born and she is ARPKD free. What a joyful time it was. I was still grieving the loss of my son, as well as gleaming with joy about the birth of my healthy daughter.

In 1996 I felt the baby itch again and wanted to have a sibling for Amanda. We immediately started going to a high risk doctor here in town. We were told that she had ARPKD, the suggestion was for me to have an abortion. This was not an option for me. She had ultrasounds from 24 weeks on weekly sometimes twice a week. Her kidneys looked normal until around 35weeks. We were sent out to another facility for a second opinion. We were told to go home and prepare for her death.

The next evening they induced my labor because the fluid was getting low and she was under some stress. She came out crying. They intubated her and she was off the ventilator within 24 hours. She was in the NICU for 9 days. This was in April 1997.

The first two years of her life were very trying. At three months old she was diagnosed with dilated cardiomyopathy (enlarged heart). They were very skeptical at this time about her living, they said we have to take it a day at a time. They told me she was very close to heart failure. Miraculously she was only hospitalized for over one week. She recovered and is followed yearly by her pediatric cardiologist. They believe it was caused from high blood pressure. Alyssa was a very poor eater and drinker and diagnosed as failure to thrive. I felt like a very bad parent. She eventually had to have a G tube inserted into her stomach and hooked up to nightly continuous feedings.

In April of 1999 she turned two years old. In May of “99” we started the testing process of donating a kidney to Alyssa. Her dad and I were both a match. Alyssa’s dad and I were torn. Do we let her get sicker and transplant or just go ahead and do it now while she is not so ill. Her creatinine was almost 3 which at that time normal for her was 0.3-0.5. She was not growing anymore either. So we opted to do the transplant. Alyssa was never on dialysis. I donated life to my baby girl and it was the most wonderful thing I can say I have ever done. Transplant day was October 28th, 1999. We both flew through with flying colors. She was a completely different child. A couple of weeks after transplant she was diagnosed with Retinoblastoma - cancer of the retina (not related to ARPKD), she had to have her left eye removed. She now has a prosthetic eye. She is followed every 6 months by her Ocular Oncologist.

Alyssa has had a few times where she has rejected her kidney, but she is now 9 years old and almost 7 years post transplant. She has esophageal and stomach varicies as well as a very large spleen. Her spleen is one of her biggest problems. It sequesters all of her red blood cells as well as white blood cells. She has chronic anemia, very low platelets, and neutropenia. In 2004 we went to the liver transplant team to discuss options of a splenal-renal shunt and the surgeons at that time felt the risks out weighed the benefits for her. We monitor her very closely.

I am a firm believer that bad things in life can have some sort of positive outcome. In 2000 I started school to become a nurse. I am now a registered nurse. I still look back and don’t know how I did it. I am a single mom, worked part to full time depending on the semester I was in, and took care of Alyssa’s special needs. My parents were very supportive in this time for the girls and myself.

Alyssa has had many obstacles to push through her young nine years. As a mom with a child who has a chronic illness my saying is to take one day at a time, and let me tell you there has been days where we took minutes at a time. I can say I spared you very many details of the heartache we have been through, but what I can say is I am very happy and honored to be Alyssa’s mom and caregiver.