When I was asked to write this post, I was honored, and I still am. Although I don’t talk about it much on my blog, my son London was born on July 28, 2000, I remember the next few days as if it was yesterday, I don’t think I will ever forget. My pregnancy with him was the hardest of my three pregnancies. It started off with severe morning sickness, whereas I hadn’t had any with either of my daughters. With my daughters, I had to be induced, so I never went through normal labor. Imagine my surprise when on Easter Sunday, 11 weeks too early, I lost my mucous plug, I wasn’t even sure if that’s what it was, because I hadn’t lost it until my inductions with the other two.
The next day, I went shopping for a bassinet, and I was feeling off, I was having some cramping, but it didn’t really hurt, it was just odd to me. When I got to work that afternoon and was sitting there, I realized that these “cramps” were coming & going at a regular interval, so I started timing them. They were about 10-15 minutes apart. I called my doctor and he told me to immediately go to the hospital. They hooked me up to a monitor and sure enough, they were contractions. I had even started dilating. Talk about scary. And at this point, we believed I was carrying a healthy baby, all ultrasounds and tests had come back clear. They were able to stop the contractions and I was sent home on partial bed rest, and I was not allowed to work anymore.
Within a couple of days the contractions came back, mostly because my husband, the father of my kids, didn’t believe the dr’s and told me I had to continue doing everything around the house, so I wasn’t even really on bedrest. At this point, the dr’s spoke directly to him and told him that now I was on COMPLETE bedrest, meaning I was only allowed to get up to go to the bathroom and to take a shower once a day, that was it, I had to be laying down the rest of the time. I was also put on Terbutiline, since the contractions were still coming and going.
I continued to have contractions on and off for the next 9 weeks, at which point I was 38 weeks pregnant and told it was okay to get up and get moving so we could get this show on the road. I was dilated to a 3 by this point, so I thought “Hey, this will be the easiest labor of all, I might actually not have to be induced with this one.” But no, London had a mind of his own and by this time had decided he wanted to be stubborn and not come out.
I ended up being induced at 39 weeks, not for convenience, but because my oldest daughter was 10 days late and was almost too big, and caused me to hemorrhage, so my dr wanted to induce a week early to make sure that the babies were small enough for me to deliver naturally. London was born at 8:01 pm on July 28, 2000. He was blue at first, but that was because the cord had been wrapped around his neck twice. He quickly pinked up after he was delivered. All was seemingly fine at first, he appeared to be healthy, and that first night, I remember looking over at him in his bassinet, looking so peaceful, and thinking to myself how lucky we were to have had three perfectly healthy babies, not everyone is blessed like that.
The day after his delivery I had my tubes tied, and I left for surgery with strict instructions to the nurses that he was NOT to be bottlefed, not formula, not water, nothing, and that I would breastfeed him when I got back from surgery. I was given my meds through my epidural, so it was safe to breastfeed him after. This is when everything changed. I was having a hard time getting the anesthesia out of my system, so I was drowsy, and London was having a hard time latching on. I assumed it was because I was drowsy and getting frustrated. He also was falling asleep a few minutes after latching on, and there wasn’t any waking him up, it was like he was worn out from just those few minutes. I also noticed at this point that his breathing was off, I told the nurses, but they just kept telling me it was normal newborn breathing. I had two babies before this, and I knew it wasn’t normal, but I couldn’t convince them of this.
On the second day after he was born, the nurse brought me breakfast, she took one look at him and briskly picked him up and told me she was taking him to the nursery to have the dr look him over, she told me not to worry and to eat breakfast. I ate my breakfast, and the nurse still hadn’t brought him back. About 15-20 minutes later I decided to walk down to the nursery to check on him. Through the nursery window, I saw him, he was under an oxygen tent and a dark shade of blue. I just broke down, the nurse called me in to sit next to him, and the dr told me that they weren’t sure what was going on, but that something was wrong. They told me that it was either sepsis or a heart defect, but that they thought most likely it was sepsis.
They had called the team from the nearest hospital with a Level II Nicu, about 30 minutes away. When they finally got there, they took a look at him and ran some tests, and realized that they could not handle it, I believe at this point they had a good idea it was a heart defect, but no one told me, because they didn’t know for sure, they just knew their hospital wasn’t equipped to handle it. We then had to wait for the Life Flight team from the children’s hospital 90 minutes away (driving), they came by helicopter. They got him stabilized as best they could, and life flighted him to UC Davis. There wasn’t enough room in the hospital, so we had to drive, by the time we got there, they had already done an echo and ekg, they shuffled us into a little room to talk to the dr’s before we could even see him. At this point, we knew something was seriously wrong.
The cardiologist drew us a picture of a normal heart, then started to draw a picture of his heart. He told us that London was born with a very serious heart defect called Hypoplastic Left Heart Syndrome, it is not one heart defect, but many heart defects all classified under one syndrome. Basically, and the most severe defect, his left ventricle was severely underdeveloped and not working at all, it was just a teeny tiny ball of muscle. Babies are born with a duct that runs between the two atriums, this is why he looked healthy and pink at birth. Soon after birth this duct starts closing, and once that is closed, this is when the defect is discovered, because the blood is not able to be pumped out to the body, that is why he turned blue, there was no blood circulating to his body.
They told us that we had three options. The first was a heart transplant, and it is very hard to find newborn hearts, and if they did happen to find one, which was highly unlikely, his chance of surviving the transplant was 30%. Our second option was a series of three staged open-heart surgeries, his first would be within just a few days, his chances of surviving these surgeries was 30%. Our third option was “comfort care”, to take him home and make him as comfortable as possible, he would pass away within anywhere from a couple days to a couple weeks. This heart defect is unsurvivable without surgery.
After we carefully considered all of our options, we decided to go through with the three staged surgeries, we were definitely not going to take him home to die. He had his first surgery at just five days old and we were in the NICU for seven weeks. His second open-heart surgery was at six months, and his third was just a few days after his second birthday. To date, he has had a total of four open-heart surgeries, along with countless other procedures.
He is now 11 1/2 years old, and still sees his cardiologist every six months. He is doing wonderful heart-wise, however it has not been easy, enjoyable watching him grow and do things we only hoped to see, but not easy. There’s been a lot of appointments, medications, procedures, and a whole list of problems that come along with Congenital Heart Defects, but seeing his smile makes it all worth it.