‘I held his tiny hand. I knew what was coming. We made the heartbreaking decision and waited for the chaplain arrive.’: Parents ‘devastated’ over loss of son born with Down syndrome, congenital heart defects

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“On February 23rd, 2018, my husband and I found out we were expecting our third baby. We have two other boys, and while Saxon was unexpected, we were very excited! My first two pregnancies were very healthy, and I expected nothing different during this one. We went through the entire first and half of the second trimester believing that everything was perfect. My quad screening came back low risk for all of the Trisomy syndromes, and at 20 weeks, we found out we were having our third boy!

Courtesy Shelby Johnston

We continued on through the pregnancy preparing for our precious boy’s arrival! On August 21st, 2018, I had a growth ultrasound. I had one during my second pregnancy and had no worries about this one. It was standard. The ultrasound seemed to take a little longer, but again, I wasn’t too worried. My baby was being stubborn. I’m in no way a professional, obviously, but when she stayed on his heart and I saw it beating, I just had a strange feeling that it looked different. I brushed that off as me overthinking and went on to my patient room, where I waited for 2 hours. My doctor finally came back and said he had some concerns about my Saxon’s heart and his kidneys, as well as talking to me about the chances of Down syndrome. This all went over my head, as I was really not expecting to hear any of that. I was told I’d need to go see a Maternal Fetal Medicine doctor at University of Arkansas for Medical Sciences in Little Rock, AR, and have a fetal echocardiogram done to see what exactly we were dealing with.

We went to see the MFM 2 times before we found out what we were dealing with. Saxon’s kidneys had cysts, but since I had such a high amount of amniotic fluid, that told us his kidneys were working and they were fine. His heart, on the other hand…was not okay. My husband and I were told that Saxon had not one, but two Congenital Heart Defects; Atrioventricular Canal Defect and Tetralogy of Fallot. He’d need open heart surgery between 4-6 months of birth, and I’d need to take a blood test to tell us more than if he had Trisomy 13, 18, or 21, which we did find out that he had Trisomy 21. On October 8th, we were told to expect a shunt surgery soon after birth, and to anticipate a 4-6 week stay in the NICU. This was rough to hear, as we live 2 and a half hours away, and our other two boys were going to have to be away from us for the first time in their lives. We knew we didn’t have a choice though and prepared as best we could.

On October 25th, at 38+6 weeks, I was induced at 8 p.m. at UAMS. I had a very easy labor and delivery, and Saxon was born on October 26th, 5:16am, weighing at 8lbs and 3oz. The doctors held him up, but I really don’t remember anything of what he looked like. I didn’t hear him cry and even asked if he was, and they said he did. I don’t think so, though. I wasn’t able to hold him or anything. They took him back to their NICU immediately, to the doctors from Arkansas Children’s hospital, who’d been waiting on his arrival. My husband went back to make sure all was well, and to take pictures for me. Saxon had a pneumothorax and that needed to be taken care of immediately. I finally saw him two hours later, in an incubator, as he was getting ready to transport to the ACH NICU. I cried and just held his tiny hand.

I was released from UAMS on the 28th and went straight to Children’s. He was doing much better than expected. He was on oxygen, but still doing better than we expected.

On October 30th, I got to hold my sweet baby for the first time! We also found out that day, that we’d be moving from the pods to the NICU’s step down unit, ‘south,’ and we’d work on feeding so we could go home, since he didn’t need the shunt surgery. What was supposed to be a 6-8 weeks stay, turned into nearly 3 months. Saxon ended up back in the pods, because the symptoms of ToF started to hit him and he was having cyanotic ‘tet’ spells. Something we learned about cardiology, was that they changed their minds often on when surgery should be done, but it was all in the best interest of our boy, and while I was frustrated… I’m forever grateful for their good judgement.

Courtesy Shelby Johnston

On January 23rd, we finally made our transfer up to the CVICU in Children’s. Saxon would finally have his surgery the next morning, and he was the first case. We fully believed everything was going to be okay. Saxon was a stubborn, fighting baby. He was going to make it!

Courtesy Shelby Johnston

Saxon had to go on bypass not once, but twice, since he had leaky valves even after the repair, and that was very necessary to fix. The second time on bypass, his body took a hit and we were told that they were putting him on ECMO to let his body rest. ECMO is a scary machine, that can do good, but you have a time frame before things go down a bad path, and we were terrified.

Courtesy Shelby Johnston

Things weren’t going very well, and Saxon needed a second surgery to help open up his right pulmonary artery, and he had this on January 30th. We thought this would solve our issues, and he had originally come out of surgery off of ECMO! We were over the moon excited, but I had a terrible feeling that things were not okay. Unfortunately, being on ECMO raises your risks of multi-organ failure, and Saxon was already being put on dialysis, as well as one of his lungs being collapsed. Saxon was also having a hard time keeping his blood pressure up, and you need a good blood pressure in order to start dialysis. We were told that he could go into cardiac arrest and we needed to decide if we’d do chest compressions or not. We chose not to, since it would’ve been very cruel and damaging to his heart. So, if he coded, that was it. We were devastated. By the grace of God, our boy tolerated going on dialysis. Around 1 a.m., I was woken up by a call saying that Saxon’s blood pressure was severely low again and that they recommended ECMO again. I truly didn’t believe my baby was done fighting, so I gave him this last chance.

Courtesy Shelby Johnston

14 days on ecmo, and you’re risking brain bleeding, and again, multi-organ failure. On February 6th, the surgeons decided to start trialing off of ECMO. It was around 1 p.m.. There were tons of doctors, nurses, ECMO coordinators, nursing students, etc. watching. He struggled with blood pressure. I was terrified, but hopeful. I prayed as hard as I could. An hour or so later, they were able to get his blood pressure stabilized and his surgeon said we were taking out the cannulas. I knew we were about to have a very rough day. Around 6pm his blood pressure started to drop. We needed him to go back on dialysis again and couldn’t while his blood pressure wasn’t stable. I watched the nurses and doctors fight for his life for 2 hours. I knew what was coming. I knew we were going to have to have the discussion of letting him pass. My husband and I made that heartbreaking decision around 8-9 p.m. and waited for the chaplain arrive. Saxon’s blood pressure never stabilized. The monitors went off the whole time. I just silenced them, and we spent as much time as we could with Saxon. I truly believe that Saxon waited for us. He waited for his dad and I to be able to hold him before he went. I held him as the nurses took the ventilator, with his daddy by his side. I was Saxon’s favorite place to be. I was his safe space. I believe with all my heart, he waited for me. I had seen Saxon at his worst, and most vulnerable. The things I saw, I’ll never speak of; but after that vent was out, I laid my head on his, closed my eyes and waited. He was so tired. He went quickly and peacefully and went home to Heaven at 11:57pm on February 6th, at 3 months and 11 days.

Courtesy Shelby Johnston

Saxon taught me so much. He helped me decide to move forward with going to nursing school and I learned so much in the NICU and the CVICU. He had such a huge impact on so many people’s lives. He was far too good for this world though and I know he is happy and healthy in Heaven, and that his daddy and I will see him again one day. For eternity. If you’ve made it to the end, I appreciate your reading our story.”

Courtesy Shelby Johnston

This story was submitted to Love What Matters by Shelby Johnston, 27, of Oklahoma. Follow her journey on Instagram hereDo you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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