Our miracle baby Shea Kalani Sieka born May 29th, 2019 with a rare heart disease called Tetralogy of Fallot. He will need Open heart surgery within the first 6 months of his life. Our family needs your support to get through this unexpected curve ball that life threw us
. Why he is a fighter and our miracle baby
Colleen and I, the parents of Shea tried everything possible to get pregnant for 5 years. We went through treatments, surgeries and numerous doctors. We never gave up hope. We were down to our last 2 options and finally one of them had gotten us pregnant. It was an absolute miracle we were having a baby boy. Six weeks into the pregnancy we got a scare. At 4 in the morning Colleen woke up in severe cramping and bleeding, so we rushed to the hospital. She had a blood clot that passed without knowing. She was on bed rest with a 2nd blood clot that was slightly larger than the baby at the time. This was dangerous because if the clot moved in anyway it could displace the amniotic sac and cause it to rupture otherwise known as a miscarriage. Colleen was put on a heavy physical restriction until the baby outgrew the clot which took 2 months. We thought we were in the clear until our 3-month routine imaging appointment. The doctor noticed the baby’s heart was not normal and had us go to the cardiologist to get a proper diagnosis. After going to the cardiologist multiple times, it was apparent he had a defect in his heart. It is called Tetralogy of Fallot and the only “cure” is Open Heart surgery. We were devastated this was another obstacle that we needed to get over. Our baby is a fighter and we knew we could get through anything with him. Finally, we needed to get through the birth to see how Shea would do outside the womb. We had a scheduled delivery to be induced with a large team of specialists to make sure the delivery went ok. After 25 hours in labor trying for a natural birth we had to go in for an emergency C-section due to scar tissue on the cervix. The procedure went perfectly and Shea came out without complications. About Shea Likes
: Rattles, Breastfeeding, chewing a mouth full of fingers, wind blowing on his face, kicking his legs, being entertained, mornings, wheels on the bus, Our dog Potato Dislikes
: Facetime, long car rides, car seat, bottles, pacifiers, naps, being alone Sheas Diagnosis of Tetralogy of Fallot
This heart disease comes in many different forms that all pertain to a defect in the hearts anatomy and can only be fixed by Open Heart surgery. In our case, Shea has a hole in the interior wall of his heart. The wall that separates the right ventricle from the left ventricle. The holes location on the wall is right under where the pulmonary artery comes into the right ventricle. The pulmonary artery’s job is to pump oxygenated blood into the lungs. Shea has blood leaking over from the left side and mixing with that oxygen rich blood.
Over time he may not be getting enough of that blood to breath. If he does not get enough blood to breath, then he does not grow, he will stop eating. In that case, he will need an emergency surgery. The goal is to get him to his planned surgery. This way he is in his strongest state of development, which will insure a great surgery an even better recovery process. At times it is hard to cope with our sons condition. Luckily, we live in NYC and modern times, so there is a procedure to fix his heart. What is going on with Shea now
We are at the cardiologist every two weeks for long ultrasounds of the heart. The goal is to get Shea to 5/6 months old for his surgery. His growth must stay at the 50 percentiles in weight and height to have a regularly scheduled surgery. If his weight and height drop he will need to be rushed in for an emergency surgery. Shea needs to feed double the amount of a ‘normal’ baby because his heart pumps faster and burns more calories. Thus, causing him to consume more food. It is a constant battle to keep his weight up and his growth at an average rate. Due to the nature of Shea’s condition, he is very limited to who he can be around. The reason for this is to keep him from getting any type of sickness, he does not have all of his vaccines so he is very susceptible to viruses. Any form of cold or flu could postpone the surgery. Therefore, putting his life in jeopardy. How we need your support
We are a two-income family that lost one of our major incomes. Colleen will be taking an extended unpaid leave of absence from work for the first half of the year and I will be taking the 2nd part of the year. As per our doctor’s orders, we are unable to utilize daycares, nannies or any other form of outside child care for a year. One parent must be home with him from now an until he heals after the surgery. This money is going towards supporting our family through this time of hardship. As well as, all medical costs that we will have during this surgery and all additional surgeries. Shea's surgery will be at the beginning of November 2019 and we really need your support today.
Thank you for reading and learning about our son’s condition. We are so grateful for Gofundme and all of you. Please share our story!!