William's story begins in the summer of 1999. Robert and I had talked about having another child, but could not make up our minds whether to try or not. After all, I already had 4 children before Robert & I met, and we had our own child together. On August 1, I woke up feeling numbness and tingling on the left side of my body and face. It lessened as the day went on, but I noted it in my journal. A week later I saw our family physician, who checked my reflexes and said my left side was noticeably weaker. She had me count backwards from 100 by 7's~ I would forget my place. She took blood, and said to stop taking my birth control pills. She scheduled a CAT scan and an appointment with a neurologist. The neurologist set me up with all kinds of tests~ ECG, EEG, & MRI. After all the test results, he ruled out MS, stroke and phlebitis. He said it could have been a mini-stroke or some sort of migraine. Either way, he wanted me to stay off the pill before I had an actual stroke. I turned to Robert and said, "I think the decision to have another child has been taken out of our hands".
In December, I used a home pregnancy test. We were nervous, as we really hadn't tried to conceive since we weren't sure we were ready for another child. We had one night without contraception. The test was negative. We were both surprised at how disappointed we were about the results. A week later, I used another test... at 4am, I woke Robert up and said, "It's a plus sign" Later that week, we found out that Robert's grandfather had terminal cancer. It was all through him. When Robert hung up from talking to his parents, I said "We're going to have a son" Robert agreed..."One William Malone will leave this earth while another William Malone is born". We'd already chosen his name... William Wallace Malone, our own little Braveheart. From the start I knew there was something special about our son.
In January 2000, I had my first OB appointment. The nurse midwife was very supportive of our decision to refuse an AFP and an amnio. Because I was almost 39, she recommended a Level II Ultrasound and genetic counseling. At the end of February, we met with the doctor and had our first ultrasound. We were right... we were having a son! The smile on Robert's face was priceless. We were curious about how our son would look... will he look like Sarah, the same colorings, or will he be dark haired, dark eyes like Robert and me? Because his heart was too small to see, we went back 2 weeks later for another level II.
March 13, 2000... The ultrasound session lasted about an hour. The doctor finally told us that William might have Down syndrome. Without an amnio, they couldn't tell for certain. I told her I wouldn't have one. The markers she spotted were the thickened nuchal fold, a short femur, a dilated kidney, and also looked like William's heart had a serious defect. She said his heart was a little to the left of where it should be, and that the left side of his heart was smaller than the right. Walking toward the car after the appointment, it suddenly struck me that William might never have a child of his own, to carry on the family name. It was the only time I ever felt sad about him having Down syndrome. And then I thought about my neighbor, a young man with DS. He was an active member of the high school band, and the ski and soccer teams. I thought of the things William would do at that age. All we had to do was to make sure his heart was repaired.
Time passed agonizingly slow. William remained foremost in my thoughts and I felt constantly on the verge of tears~ I prayed that there wouldn't be any complications and that he would be strong enough to endure whatever surgeries lay ahead. William was so active and his heartbeat sounded so strong at my regular checkups, you wouldn't know there was anything wrong with his heart. What a feeling it was to have this life inside~ moving, kicking, hiccupping.
After meeting with a pediatric cardiologist at Boston Children's Hospital April 21, we felt hopeful about William's heart. The cardiologist looked at William's heart for over an hour, and took measurements that he would compare with another fetal echocardiogram in a few months, to ensure that William's heart was growing proportionally. Following the appointment, we went to the Antenatal Unit at Brigham & Women's Hospital for another ultrasound. They took measurements of William's bones, his kidneys, measured amniotic fluid and peeked at his heart. We then met with the Genetics Counselor there. He recommended an amnio, which I declined. He went on to say that without knowing for sure if William had an extra chromosome, he wouldn't be able to guarantee a natural childbirth. When Robert & I told him that it wouldn't matter if William had Down syndrome, the doctor admitted that it would make it easier for the doctors to know in advance; that they could make preparations for the appropriate tests at birth to rule out other medical issues associated with T21. Again, we refused the amnio. The doctor said that without an amnio, he would recommend a C-Section to avoid putting William through any birth stress. As I began to redden and tear up, Robert stressed to the doctor that they would have to do what they felt necessary, but that he would not subject me to a chance of miscarriage by doing an amnio, just to ease the doctor's mind. (Robert was ready to deck him if he didn't let up)
We put our faith in God's belief in us. We felt we were entrusted to take care of William, to trust our instincts about his care.
In late May, our regular genetics counselor called after reviewing our latest ultrasound (we were having one every 3 weeks) and was worried that William was having seizures. She fed-exed a copy of the u/s to the Antenatal Unit at Brigham & Women's, and scheduled us to be seen there by the end of the week. I spent the remainder of the week worrying if William's movements were normal or not. So, on June 2nd, my 39th birthday, we were back in Boston, talking to the other genetics counselor (the one Robert wanted to punch before). The doctor had shown the u/s video to a group of other doctors (Neonatal & Pediatric Neurologists). He showed it to them to see if they could pick out anything unusual. When they didn't, he replayed the part our doctor was concerned about, and again, they said the movements were normal, and that some babies just move very rhythmically.
June 19th~ back to Boston, this time for a followup with the pediatric cardiologist. He studied William's heart for an hour, had me get up and walk around for 10 minutes to get William to shift position, then studied William's aorta for another hour. Afterwards, he showed us graphs comparing the measurements from April with this visit. They showed that William's heart was growing proportionally; the right side was high on the normal range while the left side was at the borderline of low/low-normal. The doctor's main concern was a coarctation of the aorta, and that it may narrow further after birth. He recommended being induced a week before my due date, so he could schedule an echocardiogram immediately after birth. He also recommended a natural delivery if possible.
In July I began to have weekly non-stress tests. There was always something reassuring about listening to William's heart. It didn't prevent me from worrying about what would happen once he was born, and I spent hours on the internet researching the heart and T21. I wanted to make sure the doctors would check for any other medical issues children w/T21 have. I found the messageboards at ParentsPlace and read what parents go through when their child has heart surgery. I looked at pictures of their kids at the hospital, trying to get myself ready for the day I would experience that with William. I looked forward to the ultrasounds, the chance to see his face, watch him move as I felt him, and the doctor even showed me how his hair moved as she gently nudged my belly.
By late July I was starting to have a few contractions, nothing major. I was beginning to dilate, and my OB thought the induction ought to be scheduled before August 15th. On August 4th, I had a regular ol' u/s at my OB's office. They noticed a low level of amniotic fluid, and wanted to call Boston to update them. A few hours later, the OB called us to tell us that I needed to get to Boston as soon as we could. After making arrangements for the other kids, we packed a bag and drove 3½ hours(hit traffic all the way) to get to Brigham & Women's. After 2 ultrasounds, they decided to admit me and keep me on bedrest. The doctors were worried about the low amniotic fluid and William's small size. I had nothing but time on my hands... time to worry about William, and time to worry about the kids at home.
By the 7th, the doctors decided the best course of action would be to continue to monitor William by non-stress tests and ultrasounds. A new problem was discovered... the diastolic flow (the flow coming from William) was starting to diminish. The doctor wanted to keep an eye on that, because if the flow reversed, William would be in danger. They figured that William would be delivered by the end of the week, that by then some test result would decide whether I was to be induced or have a C-section. I prayed that God grant William the strength and the will to make it to the end of the week. The following day the diastolic flow was normal again.
The same week, Robert's grandad was back in the hospital, and the prognosis was he had very little time left. He was becoming delirious. In moments of clarity, my father-in-law told me, he asked how the baby was doing.
August 9~ I had my 20th ultrasound. Got a great picture of William's face. Reminded me of Sarah. I would look at William's face, rub my belly and tell him how much I loved him and would soon be holding him..."Hold on William, please." The flow through the cord was normal for the second day in a row, and the amniotic fluid was finally normal.
The contractions started intermittently on the 10th, enough for 2 of them to show up on the non-stress test. William's reactions to them were great and we got a day off from ultrasounds. That night I watched a PBS show about the history of the grand piano, hosted by Billy Joel. I held the little speaker to my belly, and whenever music was playing, William moved rhythmically to it.
Friday, August 11~ my 21st ultrasound showed low fluid and low flow. One of the young doctors visited and explained that on Sunday they would soften my cervix and the plan is to deliver on Monday.
August 12~ The morning ultrasound showed that the amniotic fluid was lower than it's ever been. Later that day, the doctors came in and said the fluid level had them concerned enough to go ahead and induce me that night. By midnight, they decided to wait until morning, when the pediatric team was better staffed. Robert & I didn't know whether to laugh or cry.
August 13, 2000~ I was started on Pit around 10am, and although I was contracting, I wasn't dilating much. Robert & I cat-napped during the day, while listening to Tim Janis' "Along the Shores of Acadia". The docs finally broke my water in the evening, and it made the contractions stronger. After 9pm, things started happening. William, like his siblings, didn't drop until just before he came out. When I finally had the urge to push, they told me to hold off until the neonatal team from this hospital and the cardiac ICU team from Children's arrived. I had to breathe through 4 contractions, and once they arrived, it took 4 pushes and out came William, crying!
A quick picture before they whisk him off to NICU
He was so tiny! 6lbs 1oz. After the teams checked him out, they bundled him so we could hold him. Three minutes later, they whisked him off to the NICU at Brigham's to get the IV's set up. Robert called the kids, called his folks. The nurse said he could go to NICU, and I wanted him to watch over our little guy. By the time Robert got to NICU, which was about 20 minutes after they had taken William there, William was in rough shape.
Robert talked to him to calm him while the nurses hooked up the IV's. He went with William to the cardiac ICU at Children's. When my nurses break came, she brought me across the walkway to Children's. Robert had been in the parents' waiting area. William was doing okay, and we did get to see him briefly.
On the 14th, William's cardiologist said the ultrasound showed that the coarctation of the aorta needed surgery as soon as possible. They scheduled it for first thing the next morning. The surgeon came by and explained the procedure to us, as detailed as possible, the set up, the surgery itself, the post-op, and the risks. Later the anesthesiologist came and explained all of that aspect to us. That night was filled with fear, worry and prayers... and a lot of tears.
Tuesday morning we woke up, went to CICU to see William and kiss him, and then went to the family waiting area. The nurse there would keep us apprised of the operation. She gave us a pager and urged us to get something to eat. We stopped at the chapel afterward, prayed, cried, and went back to the waiting area. Just after 9, the nurse informed us the surgery had begun~ at 9:30, it was over and everything went smoothly. The surgeon brought us to a room to explain the procedure had gone very well, and that the actual time of surgery was 19 minutes. We got to see him around 1pm, but they were keeping him sedated to let him heal.
Coarctation repair Post op
The following day I was discharged, and the CICU team said William would continue to be sedated, so Robert brought me home. The nurses thought it the best idea, because they said I'd need my rest for when William was in the step down unit. We must have called to check on him every 90 minutes. On Friday we brought Sarah and Doug to Boston to meet their new brother. Sarah kept asking me, "Is that my William? Can I keep him? I love him! He's my best friend."
By Monday the doctors decided William was well enough to go to the step-down unit. Just before we went over, the doctor gave me the results of the chromosome analysis. She was trying to tell me gently that William had Trisomy 21~ I think I surprised her by telling her that we would have more surprised if she said he didn't have it. I asked her if he had any other medical issues, and she said he didn't. They were running thyroid tests, and the results weren't in.
The nursing wasn't going well, though William did seem to take to the breast. They had started him on a tube when he was in CICU and were feeding him the breastmilk I'd been pumping. But once they removed it, he wasn't gaining any weight. When the nurses tried feeding him a bottle, he'd guzzle and choke. The lactation specialist came by and helped me with different techniques. By Friday, the surgeon and cardiologist were ready to release William, but they did note that he might require surgery to close his 7mm ASD. We'd also met with an endocrinologist, who put William on levoxyl for his hypothyroidism.
Daddy & William while waiting for the discharge papers
Sarah just could not give him enough kisses!
The visiting nurse came often to do a weight check on William. He wasn't gaining very well, so I resorted to feeding him breastmilk with an oral syringe. He would always fall asleep at the breast, and he would gag on the bottles, no matter what nipple I tried. I kept thinking I was doing something wrong, but Robert, the pediatrician and the cardiologist assured me it was because of the ASD.
Robert's grandad continued to worsen, and when he was awake he'd ask about William and want to see pictures. When they would tell him the baby was fine, he'd go back to sleep. Grandad died Sept 6, and Robert made arrangements to fly down over the weekend.On the 7th William had a cardiology checkup. The right side of his heart was enlarged, and the ASD was still 7mm. His lungs were looking cloudy, and the cardiologist decided that William would require surgery by the end of the month. He increased the digoxin and lasix, and put William on a 30cal/oz diet. I worked hard to get the weight on William. I kept a record of all the milk I gave to him~ the quantity, the time and how long it took him. My nipples were sore from pumping~ they hadn't been toughened by baby gums.
The scar from the coarctation repair
Despite the weakness caused by congestive heart failure, William was holding his head up more and more. He often used his arms to push off when he was against my shoulder/chest.
By September 18, William's respiration became a cause for concern. Between that and his liver beginning to enlarge, his ped called the cardiologist. The cardiologist called me and said he scheduled surgery for the 25th. It was the right decision. 2 days later, William's breathing became more erratic. He would drink his bottle vigorously for a minute, then stop and try to catch his breath. What a mixture of emotions I was going through. While it was a relief to know he would be too young to remember any of this, and knowing that once his heart was repaired he would be able to gain weight, I was torn knowing he would be having open heart surgery this time. It was going to be tougher to see William hooked up to IV's this time. I had all that time to hold him, to nurture him, snuggle & kiss him.
Grandma holds her little William.
The weekend before the surgery we spent in the step-down unit. William was closely monitored, and I would watch helplessly as his breathing would jump from 66 to 88, to 72 and even to 108, then 82, 55 and sometimes drop to 30. With the nurses there to feed William at night, I had my first long stretch of sleep in over 6 weeks.
Journal entry...September 25~ 8:30am... They made the first incision 15 minutes ago. I haven't figured out what's more difficult... the waiting now, or watching William's respiration these last several days.
8:40am... The nurse just told us that William is now on the bypass machine. William was more tired than usual yesterday. It's been quite obvious that we made the right decision to stay here at the hospital over the weekend.
9:35am... Off bypass. They patched the hole, and didn't have to go back and put a little hole in it. So,... good news! Hopefully, we'll get to talk to the surgeon soon.
10:20am... We're up in the CICU waiting area. The surgeon had come out around 10 to talk to us~ everything went well. The pressures were good after they took William off of bypass. We got to see William around 11:30. His color looked really good. I didn't realize how ashen he had been looking the last few weeks. Robert and I looked through the medical paperwork and saw a summary from the surgeon to the cardiologist. It said that William does have mild to moderate Hypoplastic Left Heart Syndrome.
September 26~ They had to hook an external pacemaker up to William's heart last night. While he was sedated, his heart rate dropped to 90; they wanted it to be around 140. Gradually during the day, they began removing various lines and tubes. Started with the leads, then the chest tubes, followed by the stomach tube and the respirator. After he was off the respiratory, they shut off the pacemaker. William seemed so alert and stronger. He sucked so voraciously on his pacifier, the nurse gave him a bottle of breastmilk. He took 43cc's of it in record time. I was so tired, yet at the same time, I was screaming with joy inside. All the while I still held the fear that there would be an unexpected turn of events.
On the 29th, he was discharged. After that, the visiting nurse came by a few times a week to weigh him. He was steadily gaining! Within 3 weeks, the right side of his heart had gone back to regular size. We met with our Early intervention team and set up a schedule. By Thanksgiving, William weighed 9lbs6oz... he was finally ON the growth chart. He began laughing heartily and everyone in the family got a kick out of being silly to see which one William would laugh harder at. He was finally plumping up and for the first time I noticed he had dimples on his hands and elbows.
Great-grandma and William Christmas eve 2000
Pap gets laughs
Grandma gets some bonding time
In January 2001, William developed bronchiolitis and ended up with a hospital stay. He wanted no one but mommy... he even began refusing his bottle and began nursing exclusively. A month later he gave up the bottle entirely. I nursed him until he was 2½. At 3 he aged out of Early Intervention and a month later began preschool at our local elementary school. He had the same pre-school teacher that 3 of his older siblings had. He even has the same kindergarten teacher that 4 of his older siblings had! Stay tuned.... I'll be sharing different William (and siblings) stories soon.