A heart of gold

By Trisha Muldoon

About Sami Lynn

In October 2008, my husband Jason and I found out that we were expecting our first child. In March 2009, we found out that we were having a girl, due mid July 2009. At that same appointment our doctor said that he thought she had PKD. Two days later we went to see the specialist who told us that there was no sign of anything wrong with her kidneys. I continued to have appointments and in June 2009 my husband and I went back to the specialist. At this appointment, he informed us that I had no amniotic fluid and now he saw something wrong with her kidneys. I was sent home to pack a bag and then head to the hospital. My wonderful and beautiful daughter Samantha “Sami” Lynn Muldoon was born at 12:53 p.m on Tuesday June 9, 2009.

She was six weeks and one day early, weighing 5 lbs. 4 oz and 17 inches long. She was transferred to the Children’s Hospital in Los Angeles. A couple of hours later, I went to the NICU to watch them load her up to be taken to Children’s, hoping that she would make the trip and make it through the rest of the night. Sami spent the next 140 days at Children’s with us driving down every day to see her.

During her stay there she endured a lot. We found out that she had ARPKD.

She had surgery at 13 days to put in her dialysis catheter, surgery to have her first kidney removed at 15 days, surgery to remove her second kidney at 58 days, CT scans, MRIs, MRAs, EKGs, ECHOs, EEGs, SIN-T scans, an upper GI scan and another surgery at 129 days to have her g-tube put in. Through all this she had been ventilated three times and it was found that she had had three 3 strokes. I got to hold her for the first time on July 7, 2009 at 28 days old.

On Tuesday October 27, 2009 Sami Lynn finally got to come home. For the next 9 months, she was in and out of the hospital, even spending her first birthday in the PICU.

On August 9, 2010, Sami Lynn was again taken to the nearby hospital for slowed, deep breathing. Within 45 minutes of getting to the hospital, Sami stopped breathing. They quickly tried to intubate her, but she went into cardiac arrest. They did CPR for 20 minutes before finally using the defibrillator on her to jump-start her heart. Once she was stable and her stats and heart rate were normal, they called Children’s to have her transported there.

Even though all tests showed no damage, it was obvious that Sami Lynn had some brain damage from the lack of oxygen while trying to be intubated and from going into cardiac arrest. Each time they took her off her pain and sedation meds she would have uncontrolled leg movements and twitching, she would clench up her arms, hands and shoulders and she would stop breathing and make the machine work for her.

We always told Sami Lynn that when she was tired and done fighting we would understand and we would make sure to make her comfortable. On Sunday August 15, 2010, I asked Sami three times what she wanted and all three times she stopped breathing and made the machine work for her. That day, my husband and I had to make the hardest decision a parent should never have to make. We decided that we didn’t want her to suffer anymore and we decided to do what we believe she wanted: to pull her ventilator tube and let her body do what it wanted to do.

That afternoon, we called family and friends and told them to come down to the hospital tomorrow to say their goodbyes. At 6 p.m. after almost everyone had left my husband and I said our goodbyes and told her how much we loved her. At 6:38 p.m. we had the doctors remove her ventilator tube. My husband and I sat on the bed with Sami Lynn between us so that both of us could hold her. Within 10 minutes Sami Lynn had flat lined. The doctor was about to pronounce her when she took another breath and continued to breath. Her Dad and I laid in her bed with her until 12:10 a.m. My husband watched as Sami Lynn’s stats and heart rate started to drop. He bent down kissed her forehead and told her that it was okay and that she could go be comfortable. Sami Lynn never took another breath. She died very peacefully in her Dad’s arms on Tuesday August 17, 2010 at 12:15 a.m. at 434 days old.

About the Walk for PKD and PKD Foundation

I became involved in the Walk for PKD and the PKD Foundation after Sami Lynn passed away. After she passed, I started doing more research on PKD to see what I could find and how I could help other with ARPKD. I came across the PKD Foundation at that point and joined the Virtual Walk (we didn’t have a walk in my area at the time). I couldn’t imagine not have the PKD Foundation a part of my life now.

Being asked to be the Seattle Walk Coordinator this year was a blessing for me. I have always tried to do what I can in honor of Sami Lynn and I thought that this would be the perfect way. I always believed that Sami was sent to me for a reason and after she passed, it was my job to pass on her strength and her ability to teach others. Being asked to be the Walk Coordinator was my way of passing on the information that I learned and to be able to learn more about PKD to pass on to others as I believe Sami would want me to do.

Raising money for the PKD Foundation through the Walk is important to me because it means having the funds to help find a treatment or cure. Every dollar I raise makes me feel that when a treatment or cure is found, I was a part of that. And, hopefully one day, I will be a part of making sure that no other child has to go through what my Sami Lynn had to go through.

The PKD Foundation has had a big impact on not just me but my family as well. It is a time for us to help others. My husband and I raise our 11-year-old nephew (we have had him for 9 years) and this is a great way for him to learn to help others and also to remember his sister. The Foundation has brought us together more as a family when it comes to PKD and Sami Lynn. The Foundation has also been a great teacher to me in regards to PKD. Before Sami Lynn was born, I didn’t know anything about it. In fact, I didn’t know there was such a thing as PKD. With the Foundation, I was able to learn what PKD was and where I can turn to for help and support. To me, the PKD Foundation is one big family there to help and support one another.

In closing

One of the biggest things that I learned through all this is not to take your life for granted. Do what you can when you can; don’t wait.

Sami had a hard 14 months but through it she went to the zoo, went to a Dodgers game, went to Disneyland and California Adventure and got to watch her big brother play soccer and baseball. Sami taught us to live each day and fight for what we want. I love you Sami Lynn.

A Heart of Gold stopped beating,
Two shining eyes at rest.
God broke our hearts to prove
He only takes The Best.
God knows you had to leave us,
But you did not go alone ~
For part of us went with you,
The day He took you home.
To some you are forgotten,
To others just the past.
But to us who loved and lost you,
Your memory will always last.