Daniel Jacob Husted
September 11, 2003 - October 8, 2003
 

Toledo, Ohio (OH) - Full trisomy 13

Parents: Jill Husted jdhusted@sbcglobal.net and Van Husted III vhusted7290@sbcglobal.net
Daniel's big brother Van Husted IV (07/01/01)
Daniel's little brother Doug las Husted (11/11/04)
We live in Toledo, Ohio

We found out that Daniel had a heart problem at 22 weeks at a routine ultrasound. We were told that it looked like the left side of his heart was either underdeveloped or developing abnormally. We were sent to have a Level 2 ultrasound done at the hospital. In addition to the heart defect, he also saw that the kidneys were slightly enlarged. As a side note, Daniel also had a two-vessel umbilical cord, which is sometimes an indicator of a genetic defect; the doctor was thinking it might be Down syndrome. We were referred to a pediatric cardiologist. The cardiologist believed the heart problem was fixable and not life threatening, in and of itself. At the time, he thought the heart was growing a little off the normal axis and that there was a narrowing of the Aortic arch. That was why the right side of the heart was larger than the left. The cardiologist also said that this was not a “normal” defect found in babies with Down syndrome. Based on this information, we made the decision, along with the Ob-gyn, to not do an amnio. We found out two days after Daniel was born that he had Trisomy 13. At that time, we also found out Daniel had a very large PDA which was the cause of the heart defect, real common in babies with Trisomy 13.

Daniel was born at 38 weeks on September 11, 2003. I was induced due to high blood pressure. My doctor was also on call that day. When Daniel was born, he weighed 8 lbs and he was 20.5 inches long. He was a little bit smaller that my first son, but Daniel was 2 weeks early. Due to his heart defect, I delivered in the operating room, the OB almost did not make it. They rushed Daniel to the room next to the operating room to warm him up, and for the doctors (neo-natal & cardiologist) to check him out. I knew some thing was wrong because he did not cry like I thought he would. He was not doing a good job of breathing on his own, so they put him on a ventilator. I remember the NICU doctors coming in to tell us that they had to tube him, and they also told us that they noticed some abnormalities; low set ears, extra digits on both hands and feet, rocker bottom feet, wide nose, and three places where the scalp did not close. The front skull suture had fused early so he had a very pronounced ridge on his forehead. I can still remember the doctor bringing him in and pointing every one of these abnormalities out to my husband and me. We got to hold him for a few minutes all while the doctor used the ambo bag on him to keep him breathing. Over the next day the doctors told us that they thought that it was most likely a chromosome problem, either Trisomy 13, Trisomy 18, or Downs Syndrome (T-21).

We didn’t really understand the doctor-supplied descriptions of these conditions at the time, other than that first two were “very bad” and were most likely “incompatible with life” (how I hate that phrase!) The day after he was born they removed the breathing tube, but had to put him back on it because he was still not doing a good job breathing on his own. We found out later that it took them 5 tries to put the tube back in. Right before I was discharged from the hospital, a geneticist came to speak with us. He informed us that he thought that it was Trisomy 13. He then proceeded to tell us exactly what that meant. He told us that babies with T-13 usually had very short life spans. My mom asked if that meant living only to be 2-3…? He said, No. Most babies with T-13 pass away in the first month; very few live to see their first birthday; and that almost all pass away in early childhood. Later on that night we received a phone call from the hospital, The preliminary DNA test confirmed that my son had Trisomy 13. We did the only thing we could do… love our son while he was here.

We spent every day at the hospital with Daniel in the NICU, and came home to spend the evenings with our oldest son, Van IV (2 yrs old at the time). Both my parents and my husband’s parents came up the NICU to be with us almost every day. We were very limited in who we could get into the NICU, but they allowed grandparents to be there as long as one of the parents were there. We knew we wouldn’t have Daniel with us long and wanted to share him with them as much as possible. On September 17, 2003, the hospital let us use a private room where the extended family could visit and where Daniel could finally meet his big brother, Van IV, for the first time. While we had this room, we had his baby blessing as well. His grandparents were also able to hold Daniel for the first time that day.

We decided to take Daniel off the ventilator on the September 20, 2003. Both sets of grandparents were there with us. The hospital gave us the private room again so we could all be together. None of the family and none of the doctors expected Daniel to be able to breathe on his own… But Daniel proved that the doctors don’t know everything. As my husband says, “We put Daniel into God’s hands and God gave him back to us, for at least a little while”.

We took Daniel home with us on September 26, 2003. We had a wonderful week with him: feeding him, changing his diapers, giving him baths, and just holding him. On October 4th he had his first apnea spell (at least the first we knew about.) My husband forced oxygen into his lungs with the oxygen bag. It took a few minutes for Daniel to respond, but he started breathing on his own and slowly recovered. My husband and I decided that even though we accepted what would eventually come, and were working with hospice, we couldn’t stand by and do nothing during his apnea spells. As his parents, while we were awake, we were going to do everything we could for him. As the days passed, Daniel had more and more apnea spells. Every night we would put him in his bed and put him in Gods hands. He died in his sleep the morning of October 8, 2003. His funeral was on October 11, 2003, his one-month birthday.

To celebrate Daniel’s 6-month birthday, we took a cruise and had a brief memorial service onboard. My in-laws and several couples from church went with us. During a beautiful sunset, this poem was read as we scattered white rose petals into the ocean…