Keegan Quinn's Miracle Story - LUTO and Dialysis

23:04 Dec 6 2014 Tampa, Hillsborough County, Florida, United States of America

Keegan Quinn's Miracle Story - LUTO and Dialysis
Being almost 40 and pregnant was very nerve-racking. I had read about the complications and risks being pregnant at 40 but I had a great first pregnancy with my daughter 12 years ago so I was confident in myself and my body that everything would be fine with this pregnancy. When I went for a routine ultrasound during my fifteenth week of pregnancy, that confidence started to dwindle. The good news was the tech was pretty sure it was a boy but the bad news was it showed a mass and that one of the baby’s kidneys was tilted. My ob-gyn, Dr. Shakfeh, wanted me to go to USF Medical Center in Tampa for more tests as soon as possible. The following week I had my first appointment with Dr. Ruben Quintero, a specialist in high-risk pregnancies. After the ultrasound, he found that Keegan had a bladder obstruction that was causing his kidneys not to develop. At that appointment, he performed an amniocentesis and drained 30 cc of urine out of Keegan’s bladder. We discussed the pros and cons about continuing the pregnancy. Without any hesitation, my husband, Joe and I made the decision that we would continue the pregnancy and put our faith in God that he would take care of all of us! I remember crying all the way home to Brooksville. The following day was Thanksgiving. I had many blessings to be thankful for. At our family dinner, we all said a special prayer for our little boy and his health.

The following week we had another ultrasound. Afterwards, we met with Dr. Quintero again about the progress of Keegan’s bladder obstruction. He advised us that since there was a lag time with our insurance company agreeing to pay for all of the testing and the turnaround time of the amnio results that we should put off any more testing and go ahead with the fetal shunt surgery. We scheduled the surgery for the following week. All I remember is that I cried all the way home and went straight to bed. That week was very emotional for our entire family! The thought of Keegan having a surgery while he was still in-utero was frightening. My husband, our daughter and I prayed and prayed like we had never done before. December 6, 2007 was the big day—surgery!! The surgery went very well-I watched the whole procedure on a monitor in the operating room. The following morning I had a follow-up ultrasound to see if the surgery was successful. It showed that Keegan had an Amniotic Fluid Index (AFI) of 6. Before the surgery it was 0!! I was so excited that it was a success. At that follow-up, I got my first 2 pictures of my little boy!! On the monitor we could see him drinking and then peeing. It was the greatest sight!! It looked like things were going to be better for the remainder of the pregnancy. I was discharged later that day with the recommendations of ultrasounds weekly for the remainder of the pregnancy. Two days later, I went back to teaching and was on cloud nine!!

The following week we had to go back for a checkup. At this visit, all of my enthusiasm was taken away when the ultrasound showed that the shunt had become dislodged from the bladder. Keegan had pulled the shunt out and it was up by his face. Dr. Quintero wanted to schedule another surgery to put in another shunt. I was totally devastated!!! Two surgeries in less than a month for my precious baby!! Emotionally I felt like I could not take any more pain or bad news. I put all of my faith and trust in a higher power that he would take care of my baby. At the next ultrasound, again the news was bad. Keegan’s AFI went from 5.1 to 0 which meant again there was no fluid around Keegan. The doctors tried to reassure me that Keegan’s lung development should be progressing but I was not totally convinced. The following week, the second fetal shunt surgery was performed. The follow-up ultrasound showed that the shunt was in place and the bladder was collapsed. My AFI was 2.4 with no membranes ruptured. At the next ultrasound appointment, we got the good news that the shunt was still in place, his AFI was 3.27 and the bladder was still collapsed. Again, we thought things were going to finally look up for the rest of the pregnancy. Unfortunately, more bad news was just around the corner. Although the shunt was still in place, it was too late! Keegan’s kidneys had completely shut down and his amniotic fluid was dangerously low. We continued with our weekly ultrasound and doctor appointments with Dr. Quintero. On March 16, 2008 I delivered my miracle baby by a c-section at Tampa General. Throughout the pregnancy, we were very concerned with his lung development. The most beautiful sound was his cry after he was delivered. I knew at that point, he was going to make it!! Because he was in such a fragile state at delivery, I was not able to see him right after his birth. He was immediately taken to the NICU for a medical assessment. Within his first 8 days of life, he had 4 chest tubes put in and was on the highest setting on the oscillator that they had ever had a baby on. Before being released, Joe and I had to decide about our living arrangements since it looked like Keegan would be in the NICU for an indefinite time and we lived an hour away. After being discharged, I moved into the Ronald McDonald House next to the hospital so that I could be at the hospital every day. When Keegan was a week old which was Easter Sunday, I was finally able to hold him for the very first time. It was like holding an angel. He even opened his eyes and looked at me like he was telling me “I am going to be fine!” When Keegan was 4 days old, we had a consultation with Dr. Campos, a pediatric nephrologist, about the possibility of peritoneal dialysis. He explained the risks but we were determined to do everything possible to save our little son. Two days later, Keegan had his catheter surgery. Two days later, he started on peritoneal dialysis. Through many highs and lows, we spent 17 weeks in the NICU at Tampa General. On July 14, 2008 we were finally able to go home after we were trained in dialysis, giving shots, training on the apnea monitor, blood pressure machine, pulse oxymeter and the oxygen concentrator that he was being sent home with, and first aid. Unfortunately, I had to go back to work a month as a teacher after his discharge from the NICU. As God has blessed us with so much throughout our pregnancy, he blessed us with a wonderful nanny, Doris who agreed to take care of him even with all of his medical concerns. She is truly a blessing form above. At our first meeting with her, there was an immediate bond between Keegan and her. Keegan is now 2 years old and he is still on dialysis at home. We discontinued the use of the oxygen 6 months ago. He is truly a happy little toddler who is making great strides every day!! He is starting to talk, loves to toddle around the house, loves looking at books and entertaining us with his actions and laughter. He brightens our day with his bright eyes and his precious laugh! We are looking forward to the day that he gets a kidney transplant and will be off of dialysis. Looking back over the last 3 years, I cannot believe how many highs and lows our family has gone through. Fortunately, we have a strong support system that keeps us uplifted with their love, strength, and support.

For those families that have been given the diagnosis of having a baby with LUTO, please know that there is a light at the end of the tunnel. I am not going to lie to you and tell you it is an easy road to travel. Please be ready for a lot of emotional ups and downs, but in the end you will have a beautiful baby that you will treasure more than any other treasure in the world. Please know that our family will be here for you in any way we can.
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