Featured Cherub of the week is Felix Helmke. Felix is the cherub son of one of our Texas Ambassadors, Christie Huff Helmke. Christie had this to share about her son:
“My son’s name is Felix Helmke, and he is a CDH warrior. At 20 weeks pregnant with our first son we were going in for a routine ultrasound, they discovered something off. We met with a ultrasound fetal specialist in Plano, TX. She there discovered Felix had CDH… I remember how lost & helpless I felt, desperate for answers and to find survivors with CDH. We then met with a specialist in Dallas, TX at Dallas Medical City Children’s Hospital. Between the two specialists, Felix and myself where monitored closely. We had an MRI done to determine Felix’s lung growth in the womb and it was around 40%.
We picked a day to be induced around 38 weeks. We went in with the plan of a vaginal birth but something was not right, we decided to have a rushed C Section. Oct. 11th 2016, Felix Helmke was born at 3:05 pm weighing 8lbs 1 oz and was 20.3 inches long, he was was very sick. They rushed him past me as I caught a glimpse of him, my husband followed behind him.
He had his own quiet NICU room – pumps, tubes and machines everywhere.
He had a little cloth over his eyes for the first week- we were only allowed to touch his hand softly, he could not get stimulated.
Felix had surgery at a little over a week old. They went through the side of his tummy (LCDH). Those few hours where so hard. His defect was very large the Surgeon informed us after surgery, but he did well and now needed rest and recovery. Slowly he progressed. We got to hold him for the first time after he was more stable. He would not orally eat anything and had horrible reflux. So at 2 months old, he went into surgery to have reflux surgery and a Gtube placed. They went down the middle of his stomach for this procedure. They were unable to do the reflux maneuver due to where his stomach and esophagus meet above his repaired diaphragm, but the Gtube was placed. After 69 long days in the NICU, Felix was allowed to leave.
Felix has a Lung specialist, a GI specialist, a Nutritionist, and an Oral therapist. Home was going well, but at 4 months old he needed to be rushed into surgery due to a bowel blockage. They went into the middle scar again, but due to scar tissue they needed to open it a bit more. His bowels were scrunched and attached to his gore-tex mesh.
After recovering from his third surgery we were able to go home, trying to find reasons for his so horrible reflux and finding blood in his throw ups we started on another path. After 4 scopes, we discovered Felix also has EOE ( Eosinophilic esophagitis) which is a chronic allergic inflammation of the esophagus. His trigger are All Dairy, so he is 100% Dairy free and he is also on Nexium 10mg a day. This has helped with his reflux greatly. His oral eating made a fabulous turn for the better. Right before Felix turned 2, he had his GTube removed, what an amazing victory! Weight has always been a struggle. After turning two, Felix started having Complex Febrile Seizures, a new journey we have yet to fully understand. Due to a complex febrile seizure we discovered from X-rays taken that Felix possibly re-herniated. We had a CT scan and it turned out he had herniated in a new small area of unrepaired diaphragm. Surgery was done on May 15th, this was his 4th surgery. May 15th he had his repair surgery, he is doing well and very happy, they where able to do the surgery laparoscopic. His bowels where up near his lungs and they pushed them down and repaired the two spots of openings.
Through all the fears, tears, frustration and pain, my son is the most amazing boy I’ve ever met. He fills every day with so much joy and happiness. He gives me so much strength, he has no idea. We are truly so blessed. Felix is such an intelligent, active, happy and wild 2 year old. You would never tell his story from looking at him with his clothes on.”