Isaac’s Story
Isaac Timothy Delisle is the son of Spencer and Stacy Delisle. He was diagnosed with a rare sequence of congenital birth defects in utero at 12 weeks gestation. Wanting to give Isaac every chance at life, Spencer and Stacy decided that he would be carried to term. Isaac was born on October 7, 2008 at Shady Grove Adventist Hospital in Rockville, Maryland. Though he lived for just sixteen minutes outside the womb, Isaac’s life has impacted thousands of people. This is his story…
On February 26, 2008, we learned that we were expecting Isaac. The first few weeks went off without a hitch. We saw and heard Isaac’s heartbeat, and everything seemed to be going well.
In late April, I went away to New York with my mom and sister for the weekend, and the whole time just felt like something was “off.” I don’t know how to explain it really… but I just noticed this weird drop in any pregnancy symptoms. I was about 12 weeks at this point, and thought it could have simply been my symptoms tapering; but because of my previous experience, I wanted to be sure.
I called the doctor and on April 21, went in for a heartbeat check. Spencer met me there, just as I was being called back. The nurse couldn’t find Isaac’s heartbeat on the doppler, so they very quickly sent me for an ultrasound. I remember asking the tech if there was a heartbeat and she said yes, but she seemed very concerned and preoccupied with other things she had found. She asked if we had had our first trimester screen yet, and I explained that we hadn’t, and hadn’t really planned on having one. I then asked her if she noticed anything that was cause for concern and she said, “Oh, yes…” and turned the screen for us to see. Now I am not one who can usually make out what is on the ultrasound screen, especially early in pregnancy; but there was no mistaking the large cystic hygroma she pointed out around Isaac’s head and neck (measuring almost 9mm while the normal range is 1-2mm), or the omphalocele (abdominal hernia) by his abdomen. We met briefly with my doctor, who immediately referred us to a genetic counselor.
As we sat and talked with the genetic counselor, my head was spinning… we were hearing things like “5-10% chance of viability, and even then, we wouldn’t know about this baby’s quality of life…” She took our family history, we talked about what these markers could be pointing to, and she recommended that we have a CVS test done to check Isaac’s chromosomes. So we did. And it hurt like crazy.
A few days later, we received the preliminary results that Isaac didn’t have Trisomy 13, 18 or 21, and the more thorough results we received about a week later indicated that all of Isaac’s chromosomes were normal, and that we were having a little boy. We were so excited… excited that there wasn’t anything genetically wrong with our baby, and excited that it was a boy.
We had additional visits with my doctor, and then had our first fetal echocardiogram. Since I was only 17 weeks, it was difficult for the cardiologist to see very much, so she recommended that I go for another one in a few weeks.
During this time, we prayed and prayed… we had learned that Isaac’s cystic hygroma had shrunk and praised God for it; we continued to pray that Isaac’s heart, brain, lungs, limbs, and everything else would be developing normally. At this point, I truly felt like Isaac was going to be okay in the long run… that he may require some surgeries shortly after birth to correct the omphalocele and that it might be a long road, but I really thought this would all be fixable.
In late June, at 20 weeks pregnant, we went to Children’s National Medical Center for our “marathon” day of prenatal tests, including a fetal MRI, another fetal echocardiogram, and an in-depth ultrasound. This is the day our lives were changed, our mindset was thwarted, and we learned that things were not at all as good as we were hoping they’d be.
The good news was that Isaac’s heart and brain looked normal, as did his limbs. But the rest of the news we received was devastating… the omphalocele contained all of his intestines, his liver, and several other organs. In addition, his spine was severely curved (termed “kyphoscoliosis”). Consequently, his chest cavity was extremely small, and he wasn’t developing the amount of lung tissue that he should (termed “pulmonary hypoplasia” or “hypoplastic lungs”). We met with several doctors, including a pediatric surgeon, who essentially told us there was really nothing they could do for Isaac. With his chest being so small, there wasn’t even really room for lungs to develop, and with his spine being so curved, there really wasn’t a way to repair the omphalocele. That day, we were essentially told that our son was going to die… perhaps in utero, perhaps at birth or shortly thereafter.
Many of the doctors with whom we met suggested terminating the pregnancy, but that was never an option for us. Isaac is our child and he deserved every chance at life. We also know that God is a God of miracles, and that He is bigger than medicine and could change all of this if it was His will.
And so as we continued the long road of many doctors’ appointments and ultrasounds, we prayed… prayed for Isaac to be healed, prayed for the chance to enjoy seeing Isaac on the ultrasound monitor, prayed that Isaac would be born alive… but over and over again, prayed for a miracle.
During those months of appointments, we learned of other smaller complications, like Isaac was sort of “stuck” in a transverse position; we also learned that because Isaac wasn’t able to move around freely, the umbilical cord never really had a reason to grow very long, and only measured around 7cm.
At about 33 weeks, I ended up in the hospital having contractions, and thankfully the doctor was able to get them to subside. Because of this little scare, my doctor decided to move up my c-section date by 10 days. This was also devastating to me. I knew that Isaac was safe inside me, and truthfully I didn’t want to have to give up 10 days with my son. But, I also recognized the importance of my c-section being carefully planned with all of the right people there, and so an emergency c-section situation wouldn’t have been good for anyone .
On October 7, our beautiful sweet Isaac was born at 8:33 am and was alive and with us until 8:49 am when he went to be with Jesus. He was so peaceful the entire time… never struggled or appeared to be in pain, and we are so, so grateful for that. We were so fortunate to have had family and close friends there to meet him, to have had a wonderful nurse who helped us make lots of memories with him, and a talented photographer from the Now I Lay Me Down to Sleep Foundation who took hundreds of pictures. We got to hold and just love Isaac for as long as we wanted. Saying goodbye to him that night was the hardest thing I have ever had to do; but I wouldn’t trade anything for the chance to have gotten to meet my son, and to love him for his entire life… snuggling with him, telling him how proud I am of him, how much we wanted him, and how much we love him.
As for Isaac’s official diagnosis? “A sequence of giant omphalocele, kyphoscoliosis, and hypoplastic lungs, severe.” Essentially, the neonatologist’s assessment is that the omphalocele was so large that as Isaac’s spine grew, it sort of had to grow around the omphalocele (which was sort of pulling him forward). She called it a “deformation” of the spine rather than a “malformation.” These two issues, in turn, caused his chest circumference to be so small that he wasn’t able to develop enough lung tissue to breathe on his own. We have been told that this was an extremely unfortunate random thing that occurs at 4-6 weeks gestation, that it is not genetic, and that there’s no reason to believe it will happen again.
Though his life outside of the womb was only sixteen minute, Isaac has had a profound impact on us, as well as thousands of people. As Isaac’s “life verse,” we picked Psalm 107:19-21—
19 Then they cried to the LORD in their trouble,
and he saved them from their distress.
20 He sent forth his word and healed them;
he rescued them from the grave.
21 Let them give thanks to the LORD for his unfailing love
and his wonderful deeds for men.
Though Isaac wasn’t healed on this side of Heaven, he is ultimately healed, healthy, happy, and whole… and for that, we are so grateful.
~ Stacy and Spencer Delisle