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Helpless, but never Hopeless

My name is Kathy Stolper, my husband, Bob, and I are the proud parents of five beautiful children. Carson (9), Patrick (3), and our 22 month old triplets, Gina, Lena, and Tina. This story is about Gina, Lena, and Tina overcoming the odds with a diagnosis of TTTS and the associated complications of being born extremely premature.

We had a spontaneous, monozygotic, monochorionic triplet pregnancy. From week 8 of our pregnancy, we had an ultrasound every other week to monitor the progress of the triplets. At 18 weeks, we were told that there was a rare disease of the placenta called TTTS and our girls had it! In our case, baby ‘C’ was the donor, baby ‘B’ was the major recipient, and baby ‘A’ was a minor recipient. The doctor drained 2 liters of excess fluid from the amnio sac in an attempt to relieve some of the pressure on the girls. We were told that when TTTS is diagnosed this early, the pregnancy would naturally abort, and that this would most likely happen in the next couple of weeks. I was advised to go on bed rest and, if the babies were still there in two weeks, to think about reducing the number of babies to give the stronger ones a better chance of survival. It was suggested that since baby ‘B’ was having the most difficulty, that she should be our choice for the reduction.

Reduction was never an option in our minds. We believed that God, and only God, had that choice. Not willing to just sit and wait it out for two weeks, Bob got on the internet and found the website for the TTTS Foundation. He immediately contacted Mary Slaman-Forsythe and she was an earthly angel. Not only did Mary lend a shoulder to cry on and compassionately listened to our fears, but she also provided hope in the form of experience and information. She told us about Dr. Julian E. De Lia, M.D. of the International Institute for the Treatment of Twin-to-Twin Transfusion Syndrome, St. Joseph's Hospital Milwaukee, Wisconsin who was performing laser surgery on others with TTTS. We immediately sent an e-mail to Dr. De Lia telling him of our situation and asking if he would be willing to help us. We were amazed to hear from him the next day. He told us that he had never performed his surgery on triplets before, but that he would be willing to examine me for the possibility. We let Mary know and since time is critical in these situation, she arranged for the Foundation to fly us to Dr. De Lia within 48 hours, she told us to contact our insurance company and advised us on exactly what to tell them to have the best chance of getting their approval, and she even offered to talk to them herself. In the meantime, we were frantically trying to arrange care for our boys. They were six and one at the time and all of our family lived in other states! Dr. Richard Porreco, our Denver specialist in at-risk multiple births, warned Dr. De Lia that we had ‘floating membranes’ as a result of the fluid reduction and before we were able to finalize any plans, Dr. De Lia called to say that he could not perform his laser surgery when floating membranes are present. He advised me to stay on fulltime bed rest, to drink Ensure, and to pray that the pregnancy continues to at least week 28! (We felt sorry for him as he was sincerely interested in helping our babies and has continued to contact us with encouraging words.)

We began having ultrasounds once a week and each week we were told that baby ‘B’ would not make it to the next week. We were also told that if one of the babies died, the other two would die soon after. I did a lot of praying, a lot of crying, and gave the babies a lot of pep talks. While all of this was going on, we had to maintain some sort of normalcy for the boys’ sake. Well, we did not make it to 28 weeks gestation. At 25 weeks gestation, my water broke and all attempts to stop contractions failed. We were advised to name the babies because their chances of survival were zero to five percent and that it would be easier to name them now than after they were gone. The girls were taken by emergency c-section, all three were resuscitated and put on ventilators. They spent the next 134 days in the NICU with one foot on earth and one foot at heaven’s gate. It seems like everyday we were told that one, two, or all three would not make it through the night. Mary continued to contact us and give us as much encouragement as she could. With her help, I was able to remember that God is the one in control. Even though we gave thanks for the wonderful doctors, prayed that they be given the knowledge and inspiration to continue helping our babies, we knew that whether we liked it at that moment or not, God’s plan for the girls would be the best for them.

So here we are, 14 surgeries and 22 months later. The girls are beautiful. They are not completely problem free, but they have made unbelievable progress. We are down from over 60 doses of various medicines given a day to less than 15. Baby ‘C’ (Tina) was born weighing just one pound and 2 ounces. She is now twenty-one pounds! She struggles with very low vision, mild to moderate permanent hearing loss, cerebral palsy, seizures, and significant developmental delays. She has proved the doctors wrong so many times (as all three girls have) that we don’t think these problems will hold her back much all. She is still on supplemental oxygen, but she is g-tube free, resilient, resourceful, loving, and happy. Baby ‘B’ (Lena) was born weighing one pound and 7 ounces (5 ounces of that was excess fluid she was trying to process as a result of being the major recipient of the TTTS). She is now twenty pounds! The jury is still out on whether or not she will need heart surgery to assist with the severe pulmonary stenosis that was also a by-product of the TTTS. She has minor vision problems, minor permanent hearing loss, and significant developmental delays, she is recently g-tube free, recently free of daytime supplemental oxygen, curious, social, loving, and happy. Baby ‘A’ (Gina) was born weighing one pound and five ounces. She is now twenty-five pounds! She has vision problems and is developmentally delayed, but has just started walking, she is free of supplemental oxygen, and she is adventurous, resourceful, loving, and happy. The girls receive weekly therapy visits and although they are developmentally behind other 22 month olds, we are told that by the age of eight, their delays will be unnoticeable.

Even in your most helpless moments, never give up hope. One day, one of the NICU doctors had just told me that Lena’s heart was weakening from being so overworked and that she probably would not make it through the night, that Gina had severe pneumonia and it was life threatening for her, and that Tina’s oxygen levels were continually desaturating in spite of being on the oscillating ventilator and that their last option for her was the ‘jet’. This same doctor then asked me how it was that I could remain so calm regardless of how bad the news I received each day. My answer was that I still have ‘hope’ and I have my faith in a merciful God and that whether He answered my selfish prayers to let me keep these girls with me or whether He took them to be with Him, it would be the right decision for them. Doctors have a lot of knowledge and talent, but God is the ultimate authority . . . so, there is always ‘hope’! We will always be grateful to the TTTS foundation, to Mary, and to Dr. De Lia. We keep them in our prayers that God might give them the courage and strength to continue to help those touched by this disease and that they might share the hope!


Tina

Tina


Tina

Tina


Lena

Lena


Lena

Lena


Gina, Tina and Lena

Gina, Tina and Lena


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