Luke and Alondra's Story
In 2003, my husband and I decided to try to have a 3 rd child. It took us well over a year to conceive our first son Matthew. So after nearly 10 years, we were not sure we would be able to conceive. We were extremely excited when I became pregnant in the spring of 2003. Sadly, I lost the baby to miscarriage around the 11 week mark of the pregnancy. After the miscarriage, we looked into adopting a child. We went as far as attending classes required of perspective adoptive parents through the Minnesota's Waiting Children program. But after the courses and more soul searching, we decided to try to get pregnant again.
We were excited when we discovered I was pregnant again in the winter of 2004. Our babies due date was November 13, 2004. As I was older and had miscarried before we were a bit concerned. We had an ultrasound at 7 weeks, where we were able to see the beginning of our baby and it's beautiful heart beat. During my 12 week check, they did some routine blood work to check for birth defects. The results came back indicating there was a chance our baby had Down Syndrome. We didn't know much about Down Syndrome at the time, but as we learned we became concerned about the health problems that are more common among babies with Down Syndrome. We decided against an amnio to confirm the Down Syndrome diagnosis at that point due to the risk of miscarriage. We knew there was nothing we would do differently no matter what the results, so why take the risk.
At my 20 week checkup, we had a Level 2 Ultrasound at a Perinatal Doctors office. During that appointment we discovered that our baby had 4 soft markers for Down Syndrome and 2 possible heart defects. Though we were somewhat prepared, the words heart defect were still a huge shock. My husband Steve had a infant brother die due to a heart defect. During my 26th week of pregnancy, Dr. Singh, a cardiologist from the Children's Heart Clinic, diagnosed the defect as Tetrology of Fallot or TOF. This defect has several characteristics, one of which is that the artery that carries blood to the lungs is smaller and flow is limited.
I did have the amnio done at 34 weeks, which confirmed our son Luke had Down Syndrome and Mosaic Kleinfelter Syndrome. I was induced at 38 weeks 6 days for a controlled delivery. My son was born alive but blue. He weight in at 9lbs 13 oz, and he was beautiful. We found out after his birth that he had 2 heart defects, the TOF and an AV Canal. He was immediately placed in the NICU in Children's hospital. There he stayed until he was 1 month old. He was on oxygen from the time he was born, but was getting stronger and we were preparing to bring him home. The plan was to delay surgery until he was 6 months to a year at which time he'll have an easier time recovering.
The first step to getting Luke home was to move him from the NICU to the ICC. That didn't last long - within the first day of his ICC stay Luke had a severe TET Spell. TET spells can be life threatening so Luke was immediately placed back in the NICU. He had 3 severe TET spells within a day and a half so something surgical needed to be done. Dr. Baker (Cardiologist), Dr. Overman, Dr. Moga (surgeons) and the Neonatal doctors decided that Luke was strong enough, his vitals strong enough, and big enough for a full heart repair. Though not customary to perform that procedure at this hospital on infants so young, we were told that it had proven successful elsewhere and Luke had a very good chance at a complete recovery.
Luke came out of surgery on a vent, and had extreme low blood pressure. Dr. Overman felt quite confident the heart repair went very well and though the first few days might be rough, Luke should recover. The next day Luke was still not improving and it was decided that Luke's heart needed some help to heal. He was put on an ECMO machine. ECMO is a smaller version of the heart-lung machine designed such that infants can stay on it for longer periods of time. He did wonderfully on the machine, and came off after a week. Sadly, a few days later his heart rate raced to over 200 beats per minute. It was decided that he need his chest re-opened and put back onto the ECMO machine. He was pulled off the machine the 2 nd time on December 23rd. He survived for another 4 weeks, but the ECMO machine and his chronic low blood pressure had damaged other organs. He went into kidney failure, had liver damage, and a blood infection. He was having Kidney dialysis sessions every hour. He beat the blood infection but his heart just wasn't strong enough to keep him alive. So on January 21, 2005, around 9:30 am, we wrapped our son up in our love and handed him to the loving arms of God and Jesus. He is loved, missed, and truly was a gift to our family. We may have only had him with us for 11 weeks, but he was our miracle child.
As we were grieving for our son, we still felt the desire to raise another child. We heard that many infants born with Down Syndrome are put up for adoption. So we looked into it,
and sooner than we expected could ever be possible, we came home with a beautiful Hispanic girl named Alondra. She has Down Syndrome but is extremely healthy, happy and smart. As I look into Alondra's eyes, I can see Luke's spirit cheering us on. He lives on in our love for Alondra. She has taught us how to love completely again.
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.