Robert and Whitt's Story

Our journey started 2 years ago, when after years of infertility and a failed IVF, I actually conceived naturally. We were so excited. When I called my infertility specialist to relay the news that I no longer needed his help, he insisted that I let him follow me for the first 6-10 weeks, because they could monitor my hormone levels to help maintain this pregnancy in the early stages. At 6 weeks, we had our first ultrasound. I was so nervous. I just wanted to know if the baby had a heartbeat. I had a friend in the same situation whose baby did not have a heartbeat. Imagine our surprise when they pointed out the heartbeat, then proceeded to show us a second heartbeat. We had prepared ourselves for a possible twin pregnancy from IVF, but never imagined that it would happen naturally. The doctor told us that the babies were low in my uterus and I could have problems with the pregnancy. He told us he thought that they shared a placenta and about the possibilities of TTTS. I came home and looked up everything I could find about TTTS. Everything I found that day was not very positive, but I put it in the back of my mind.

Eight weeks came around and the ultrasound showed that my cervix was funneling. Both babies were doing fine, but one baby was measuring about a week behind the other. The doctor told me I would need a cerclage (stitches around the cervix opening) to keep my cervix from opening anymore, but I had to make it to 12 weeks first. My next appointment was with my local OB at 10 weeks. The babies were still doing fine and it appeared that they each had their own placenta. One baby was still measuring a week behind. My cervix had opened more and my OB decided to go ahead and do a cerclage at 11 weeks to try to prevent early labor or a miscarriage. The procedure still had a risk of my water breaking and causing early labor, but if I didn’t have it I would miscarry. The cerclage went smoothly without any complications.

My OB said the next step was to make it to 24 weeks, the age of viability. I was put on bedrest and the next few weeks went by without any problems. I had ultrasounds every 2 weeks and both babies were doing fine. Of course, one was still measuring a week behind. They were both so active. At night, they would keep me awake, kicking at each other. We watched on one ultrasound as one kicked the other in the stomach and the other kicked him back in the face.

At 24 weeks, I thought that there was a clear end in sight. That weekend I noticed less movement. I contacted my OB and went in for an ultrasound. He told me then that he thought I had TTTS. Up until that point they thought I had 2 placentas, but now they weren’t sure if it might be one or two that had fused. We were sent to a perinatologist about 1 ½ hours away. My blood pressure was also starting to go up. Stress VS Toxemia?? The doctor told us that night that he was pretty sure that it was TTTS and what our options were. We could choose to have the laser surgery to cut the connection, tie off the cord to the smaller twin, or wait it out. We told him we needed to sleep on the decision.

That night we prayed that God would take this decision out of our hands. I didn’t feel that I could make the decision to terminate one of my babies and live with myself. I’m not judging people that do make that decision; I just could not do it myself. The next morning, another doctor in the group, told us that the smaller baby was so compacted that laser surgery would not be possible. There was not enough room to maneuver to even tie off the cord if we had decided that route. He said our only option at that point was to wait it out and try to get to 26 weeks for a better chance of survival. My blood pressure was still an issue and he said we might have to deliver soon due to toxemia.

The next couple of weeks went by so slowly. I had gotten a round of steroids just in case I had to deliver. Both babies were still doing fine. The smaller baby was still chugging along even with low fluid. The larger baby never had a larger amount of fluid, which was good for him.

At 26 weeks, the protein in my urine skyrocketed. I was admitted to the hospital and had an ultrasound. The ultrasound showed that the little baby was struggling to breathe and his heart rate was dropping. It was hard to watch. We prayed that night that God would help us make peace with the fact that he was dying.

The next morning, my ultrasound showed that Robert Carlton had passed on. We were devastated and relieved at the same time. We were grieving, but also had to focus on the baby was still alive and doing well. If you’ve been through this, you know that there is a risk of backflow to the baby that is still alive. We could still lose him. Luckily, we made it 4 more days, before my liver enzymes got too high that I had to deliver at 27 weeks.

Whitt Chandler was born November 21, 2005 weighing 1lb and 11ozs. Robert was still born 3 minutes later weighing 15 oz’s. I remember being prepared for silence, because I knew Whitt would probably have to be resuscitated. I am a Neonatal Pediatric Respiratory therapist myself. I knew the complications that premature babies face. Much to my delight, I heard him squeaking as they carried him over to the radiant warmer to assess him. After a couple of minutes, they brought him over for me to look at before they took him to the NICU. All I could see was this patch of blond fuzzy hair and 2 big bright eyes staring back at me. It was the face I had been waiting years to see and it was overwhelming.

A couple of hours later, they let us hold Robert. He was so tiny. He looked so peaceful. I was glad to have this last image of him, instead of the ultrasound when he was struggling so hard to breathe. Because of the mag drip and other things to keep me from having seizures from my blood pressure dropping after delivery, I didn’t get to see Whitt again for 2 days. He was breathing on his own, but had to be put on CPAP to keep him from wearing out. His PDA (hole in heart that closes after birth) had opened back up and he developed a pulmonary hemmoraghe. He had to be put on the ventilator to rest his lungs while they treated him. He had to be sedated because he was fighting the vent so much. His PDA closed with the first dose of medicine, but now he had a head bleed. It was a Grade 2 which is not uncommon with preemies. He steadily got worse. His blood pressure was unstable and he was unresponsive. The doctor told us that she had to give him steroids to try to help his blood pressure, but it could make his head bleed worse. It was our only option.

At this point, I had started distancing myself from Whitt. I was preparing myself for another loss and wasn’t sure if I could handle it mentally, physically, or emotionally. I prayed that God’s will would be done, either way it went. The doctor told me Whitt’s head bleed had progressed to a Grade 3 and that he probably had significant brain damage due to his unresponsiveness. I thought to myself, maybe he’s just sensitive to the sedation. Maybe he just needed another day to come out the fog. The rest of my family was sensitive to it, so why not my baby. Besides, he had been fighting for so long to live, he just needed the rest.

I prepared to go home, 1 ½ hours away. I told myself, you’re just in the way, go home. The day that I was leaving, we went in to talk to Whitt. As we were talking to him, he started wiggling his fingers and toes. It was like he was saying mommy don’t leave. At that instant, I decided I would stay with him until he died or came home. Thankfully, my husband supported us financially and I could live in an apartment next door to the hospital. For the next 11 weeks, Whitt continued to improve. He became the NICU favorite. I could not have had a better NICU to take care of my son. It was obvious they were there because they loved their jobs, not because it was a paycheck. It was an emotional roller coaster to say the least.

Whitt is now 21months old, 18 months adjusted and doing great. He is a little delayed on speech and walking, but still within normal limits. He is followed by Early Intervention at 6 month intervals to catch any delays that need assistance. I prayed to God while he was sick to just let him be able to play like any other little boy. I didn’t care if he was smart, just physically able to move. I got so much more. He is smart, loving, and into everything. I know that everyone’s story is different. Some have total success, while others none. I want others to know that they are not alone when facing these difficulties. I tried to keep things in perspective. I never felt like I could complain, because everywhere I looked in the NICU, there was always someone else with a worse situation.

Thank you and God Bless. Jennifer Yancy, mom to Whitt Chandler(21months) and Robert Carlton(stillborn)Oxford, MS