Nicole Parlin Saul is the epitome of bubbly. Her effervescence can light up a room. Niki (that’s what her countless friends call her) beams when mentioning her husband Ben, who happens to be her college sweetheart. Her sons, 12-year-old James and 5-year-old twins Kellan and Tristan, are the apples of her eyes.
So it was hard to see how much pain she was in when she began to realize that her twins’ developmental delays were caused by more than their premature birth.
Niki graciously offered to share her story in hopes that her struggles and revelations will help other families in their journey.
ON A DIFFICULT PREGNANCY
When my oldest son was born I had an emergency Cesarean Section which resulted in internal scarring that made getting pregnant again extremely difficult. Ben and I very much wanted to make Jamie a big brother and we worked diligently to make it so! I had surgery to reduce my scar tissue, and then we began the IVF process. Concurrently we began pursuing adopting a child.
After 2 years, 4 cycles, and a failed ectopic pregnancy, we discovered we were pregnant with identical twins. The three of us had never been more excited! The pregnancy was a very difficult one. I had to be put on bed rest and yet at 31 weeks gestation, I went into preterm labor and the twins were born.
ON CARING FOR FRAGILE NEWBORNS
Being micro-premies we knew they were going to face many challenges and health risks and while we were so glad they were here – we were terrified!
They were in the NICU for over 10 weeks. There they contracted an infection in their blood that caused them to go septic and both almost died. A blood transfusion, intubation and heavy doses of antibiotics saved them. Tristan never had a recurrence, but Kellan had the same infection 3 times, each time we came close to loosing him. On Christmas Eve at 4 months old he tuned blue in my arms in front of us all and we had to call an ambulance to rush to the hospital. But he made it. We all did – we are here!
What got us through was honestly adrenaline, a numbness, and the help of family. My mother-in-law took time off of work to move in with us. My parents who are local helped Ben and I manage. Jamie was in school, Tristan was home, and Kellan was often in the hospital. We all rotated to be there for them all. It was so busy I rarely felt much – I was just moving from child to child trying to keep them healthy and happy. Just putting one foot in front of the other day by day was how we survived.
ON EARLY INTERVENTION
Once they were stable and home for good we began Early Intervention Services. A Social worker and Speech therapist would come to our home several times a week to work with the twins and teach us how to help them develop. As premies and with all the lost learning time when they were sick it was assumed they would have severe learning disabilities and need extra support. They developed very slowly globally. Late to babble, sit up, walk, talk.
Everything was a struggle. We did not know if it was because of their prematurity, their infections, or if something else was wrong. We worried constantly.
They transitioned to a public special needs preschool program with typically developing peers and did very well. They received the services they needed: speech therapy, OT and PT as well as accommodations. They also learned how to be a good friend, follow directions, how to behave in a classroom environment, and have been very happy there. They are progressing – but very slowly. We supplement with private Speech and ABA therapy after school 5 days a week, and swimming as physical therapy on Saturdays.
ON A RARE AND DIFFICULT DIAGNOSIS
At age 2 we began seeing a Developmental Pediatrician who suggested we meet with a geneticist to test whether or not there was something else causing the twins’ severe delays. After years, a test came back positive. They have an extremely rare genetic disorder that causes global delays, may cause Autism or ADHD, and sadly leaves the boys susceptible to developing cancer. Kellan was diagnosed as Autistic and Tristan as having severe ADHD at the same time. Due to the cancer risk we began screening with 11 different specialists at Children’s Hospital (in Washington DC). Every 6 months for the rest of their lives we will screen for cancer, so that when it develops we will catch it early, treat it aggressively and hopefully cure it.
ON HOW THE DIAGNOSIS SAVED HER
Before the diagnosis I was scared and sad all the time. I was depressed and confused. I blamed myself for not carrying them to term. I wondered if their infections and sepsis of the blood had caused brain damage. I felt inadequate to help them. I felt like I was failing as a mother and wife. I worried my emotional state was effecting everyone, and I blamed myself for hurting everyone more. I isolated myself because I felt like I had nothing nice to say and so much hurt in my heart. I went through the motions but I was barely functioning.
The diagnosis is shocking and hard to accept, but it saved me and my family. Now we had an explanation and a map we could follow. We know why the twins struggle and how to help keep them healthy and developing. We see the top specialists and travel to the Cleveland Clinic in Ohio to meet with the one geneticist that is studying their disorder. She was able to reassure us we are doing everything we can. All the doctors, therapies, schooling are exactly how best to support them. It was a mutation that happened randomly during the pregnancy. It was not my fault! I was doing everything right by them!
A cloud lifted. I felt like Super Mom. I had my instructions and I am living them. I happily go through the hospital testing, therapy and schooling and know better how to teach and support my own children. I am strong. I love them and believe in them. I found hope and acceptance. My health, mood, marriage, mothering and relationships all improved dramatically. I am a happy, confident person for the first time in years. The diagnosis freed me from guilt and worry. Now I make each day as rich and positive as I can for my family, because they are my blessings as is the time we have together.
ON CARING FOR BIG BROTHER
That could be the end and beginning of my story but there is a very important missing piece. I know what is afflicting Kellan and Tristan and that we are supporting them as best we can, and that is a comfort.
Jamie. My oldest son. He is my biggest concern now. We try to keep him from worrying, try to act brave and joyful even when our hearts hurt, tell him his job is just to love and be loved by his brothers… but I worry. How has this affected him? How, when they get sick, will he process their suffering? How does he feel about how much time and attention it takes to support his brothers? How do I protect him?!
I don’t have a road map for my typically developing pre-teen. It scares me most. He is one of the kindest people I have ever met. He loves his brothers and is wonderful with them. He is helpful but I insist he just play with them and be their big brother. I do the doctors and hospital visits when he is in school. The therapies happen privately in the study when he is home. He knows his brothers are developing slower than some but that all he needs to do is love them, and that we will help them grow and keep them well. He does not know they will develop cancer. That is too big of a word and a fear. We will handle that when we are faced with it and not burden him before.
He seems emotionally well and happy. He does well in school and at sports. He seems accepting of his brothers and loves them well! The twins in turn adore him. So far I think we have helped him through and he is ok, but Jamie is the one I watch most closely.
We are a happy healthy family today. I am afraid of the future, but I believe we are all strong enough, and love each other so fiercely that there is nothing we cannot overcome or endure.
I am proud of myself, my husband, Jamie and Kellan and Tristan. I know we are brave. We got this – because we love each other first. The 5 of us are lucky in love!