Our miracle baby, Benjamin Noah, was born on September 16, 2015 at 11:02 am.
Although we knew at about 12 weeks gestation that there was a good chance he had Trisomy 18, we felt very strongly that he was a gift from God and we were going to do everything possible to give our son a chance at life.
The doctor’s at the time told us that because we were carrying a boy with obvious markers for Trisomy 18, that I would likely miscarry by 20 weeks. However, at our 20 week ultrasound, we found that our son was thriving and doing very well. He continued to have a strong steady heartbeat and regular fetal movement and activity. We were so overjoyed to see that he was fighting. Sadly, it was also at 20 weeks that we discovered some more issues that we had not been able to see earlier on in the pregnancy. At this point we were able to see that he was measuring very small, had a severe case of Spina Bifida from his lumbar to his sacrum, severe club feet and Hydrocephaly. Even knowing all this, we were not going to give up on him. If he was going to keep fighting, so were we!
Over the next several weeks and months, we had many people praying with us for Benjamin and by God’s grace , we carried our little fighter 39 weeks. At this point we were so incredibly thankful to have had 39 wonderful weeks with him, but we were still going to believe for more.
At delivery, Benjamin was not breathing well and was given an APGAR score of 1. However, after receiving help from an amazing team of NICU nurses he was intubated and became stable enough to transport up to the NICU for continued care. Immediately the NICU docs and nurses ran many tests, x-rays, and scans to assess how critical our sweet boy was. From those tests we found out that Benjamin had even more issues than we had discovered in utero. It turned out that in addition to the Trisomy 18, Spina Bifida and Hydrocephaly, he also had a large VSD, a missing corpus callosum, and a horseshoe kidney. The odds were truly stacked against him, but still he fought on. And took on the nickname given my many nurses and friends “Lil Fighter”.
In his first 2 weeks of life, Ben underwent 3 major surgeries- a repair of the large opening on his back (which was a huge undertaking) as well a shunt placement and then a shunt revision. And despite his critical condition, he made it through these surgeries with flying colors and was a very content and happy baby the whole time.
In the weeks that followed, his respiratory issues began to improve as well. He went from complete support down to partial support with CPAP and then down to another form of support called Vapotherm. We were amazed at the strides he made and how happy he was during it all. Even the nurses and staff couldn’t believe how well he was doing. We knew it was only by God’s grace that this was possible and continued to pray for God’s will for his life.
It wasn’t long after his support decreased down to the lowest settings, that we ran into an issue with his VSD. The pressures in his body and lungs had started to change and he began to battle pulmonary edema, apnea, and bradycardia. Although we had seen some issues with this earlier on, he responded to the medications well and seemed to maintain his breathing and oxygenation the way he was supposed to. However, at 33 days old our sweet boy began to really struggle with his breathing and grew very tired. We responded with tests to rule out other issues and by increasing his support. However, he continued to lose respiratory drive and passed away in our arms at 35 days old.
Although we are completely heartbroken that our son only lived a short while, I have to say our days with him were so full of love and sweet memories. My husband, our other 3 kiddos and I were able to snuggle him, read to him, bathe him, change diapers, feed him and love on him as much as humanly possible. We were even able to do a baby dedication and had many many friends and family come meet him during those 35 days. Everyone commented on how content and sweet he was and how his bravery and fight challenged them to grow in their faith and trust in God. He truthfully was an amazing little guy. He was one of the happiest, most alert one month olds we have ever seen! There is no doubt in our minds that we loved him well, and that he knew how much he was loved. And we are so grateful that we were able to give him a full life despite the circumstances. Benjamin was and will continue to be a huge blessing to our family, and we look forward to the day that we will be reunited with our precious angel baby in Heaven!