Baby Clark's Journey- Spina bifida
Donation protected
Hello everyone! Many of you know Lauren, Matt and sweet Celestina (7 years old). Some of you know that last summer, they welcomed mighty little Clark into this world. For those of you who don’t know his whole story, we would like to share it with you.
On July 19, 2015, we all eagerly waited for the birth of little Clark Yampa Kuckkahn. So much joy, and fear poured over the family when we learned that he was born with Myelomeningocele spina bifida, microcephaly, cleft palate and congenital hearing loss. This came as a complete surprise to everyone, even to Matt and Lauren, since prenatal ultrasounds had not shown the defects. After his birth, he was immediately flown to Denver, to a children’s hospital. Doctors quickly began running tests to determine the cause of his birth defects, as well as his probability of living. Lauren and Matt were told there was a 90% chance that Clark had Trisomy 13, which would have caused Clark to pass away within his first weeks of life. Little Clark proved those doctors wrong, not only did he not have Trisomy 13, but after extensive chromosomal testing, he showed no chromosomal mutations at all. Geneticists began researching, and continue to research the cause of his defects. Clark spent his first 6 weeks of life in the NICU and recovery. He went through surgery to repair his spina bifida wound and went through feeding therapy.
After being released to go home, Clark grew and developed very much like any other baby. His parents worked with doctors, therapists and specialist to ensure that Clark was getting the care he needed to give him the best chance to continue his development. He soon started having issues gaining weight, and after tests, Matt and Lauren were told that Clark would need neurosurgery for hydrocephalous. He was recommended for a procedure called endoscopic third ventriculostomy (ETV). After surgery, Clark suffered a severe seizer. He was heavily medicated to prevent further seizures, and also received antibiotics for MRSA, which he tested positive for. Soon after being weaned off of most of his medication, it became apparent that Clark was having great difficulty breathing. Clark continued his stay in the NICU, now with a breathing tube and feeding tube. He is aspirating, and although he will be able to breathe without assistance, he must remain on a feeding tube until after his first birthday. It has been three weeks since Clark first went in for his surgery. He is finally out of the NICU, but not for long. This week, Lauren and Matt were informed that the surgery for hydrocephalous was unsuccessful, and he will have to have surgery again very soon.
Lauren stays home and cares for Celestina and Clark, while Matt works as a property tax assessor. They live in Hayden, Colorado where they can enjoy the mountains, and outdoors. Clark and his family now prepare for another surgery, after a very terrifying and difficult recovery over the last three weeks. Surgery and hospital visits are ongoing for Clark, and it is difficult to predict what the future will bring. Everyday there is something new that arises for their family, and any help that can be offered is very much appreciated.
Thank you, for all your positive thoughts, prayers, and support. Our entire family is forever grateful!
On July 19, 2015, we all eagerly waited for the birth of little Clark Yampa Kuckkahn. So much joy, and fear poured over the family when we learned that he was born with Myelomeningocele spina bifida, microcephaly, cleft palate and congenital hearing loss. This came as a complete surprise to everyone, even to Matt and Lauren, since prenatal ultrasounds had not shown the defects. After his birth, he was immediately flown to Denver, to a children’s hospital. Doctors quickly began running tests to determine the cause of his birth defects, as well as his probability of living. Lauren and Matt were told there was a 90% chance that Clark had Trisomy 13, which would have caused Clark to pass away within his first weeks of life. Little Clark proved those doctors wrong, not only did he not have Trisomy 13, but after extensive chromosomal testing, he showed no chromosomal mutations at all. Geneticists began researching, and continue to research the cause of his defects. Clark spent his first 6 weeks of life in the NICU and recovery. He went through surgery to repair his spina bifida wound and went through feeding therapy.
After being released to go home, Clark grew and developed very much like any other baby. His parents worked with doctors, therapists and specialist to ensure that Clark was getting the care he needed to give him the best chance to continue his development. He soon started having issues gaining weight, and after tests, Matt and Lauren were told that Clark would need neurosurgery for hydrocephalous. He was recommended for a procedure called endoscopic third ventriculostomy (ETV). After surgery, Clark suffered a severe seizer. He was heavily medicated to prevent further seizures, and also received antibiotics for MRSA, which he tested positive for. Soon after being weaned off of most of his medication, it became apparent that Clark was having great difficulty breathing. Clark continued his stay in the NICU, now with a breathing tube and feeding tube. He is aspirating, and although he will be able to breathe without assistance, he must remain on a feeding tube until after his first birthday. It has been three weeks since Clark first went in for his surgery. He is finally out of the NICU, but not for long. This week, Lauren and Matt were informed that the surgery for hydrocephalous was unsuccessful, and he will have to have surgery again very soon.
Lauren stays home and cares for Celestina and Clark, while Matt works as a property tax assessor. They live in Hayden, Colorado where they can enjoy the mountains, and outdoors. Clark and his family now prepare for another surgery, after a very terrifying and difficult recovery over the last three weeks. Surgery and hospital visits are ongoing for Clark, and it is difficult to predict what the future will bring. Everyday there is something new that arises for their family, and any help that can be offered is very much appreciated.
Thank you, for all your positive thoughts, prayers, and support. Our entire family is forever grateful!
Organizer and beneficiary
Jessica Smith-Harman
Organizer
Papillion, NE
Lauren Smith-Kuckkahn
Beneficiary