Saturday, December 12, 2015

December 12 - Dear Nicholas Sparks (Guest Blogger Mark & Clare Kelly)

Dear Mr. Sparks,

This is the story of our son Lewis who was diagnosed in utero at 20 weeks with a left-sided diaphragmatic hernia. My wife Clare and I were trying for our first baby, and to our surprise, she fell pregnant almost immediately; we were thrilled to bits. But at six weeks, Clare started to bleed and from then on the pregnancy seemed to go from bad to worse. The baby survived the bleed and when our 20-week scan finally came around, we were excited to see our healthy growing baby. These feelings were soon stamped on when the sonographer said there was something wrong. We had a feeling something was not right when there was a silence throughout the scan. The sonographer told us that she was pretty certain that our baby had a diaphragmatic hernia and that she was going to check with a colleague. She then left the room. Clare and I looked at each other in horror-- what the hell was a diaphragmatic hernia? We waited a good 15 minutes before someone finally returned and explained to us how serious the problem was. We were both devastated since our baby was only given a mere 5% chance of surviving; we went home and told the family the bad news. Our specialist had given us two options, firstly to end the pregnancy and secondly to carry on knowing the bleak outlook. We considered the first option but not for very long. Our baby only had 5% chance of making it, but that meant that there was a chance, and we couldn't throw that chance away so we chose to carry on.

Clare had an ultrasound scan every 4 weeks and also had an MRI scan to confirm that the liver had not herniated into the chest. The liver appeared to be in its normal position, which was something anyway. The scans revealed that our baby had a large left-sided CDH, and the stomach, intestines, and bowel were all in the chest, which pushed the heart over to the right side and compressed his growing left lung. Later in the pregnancy, the baby's lung to head ratio was 1.67 which we were told was a good figure, and Clare was booked in to have 4 courses of steroid injections to encourage lung maturity. It seemed that at every scan there was a little more glimmer of hope, the chance of survival had risen from 5% to more like 50%. A foetal blood sample was done to rule out any other abnormalities, and after two weeks of agony the results came back normal. It was from this test that we found out we were expecting a baby boy. Each time we came away from the hospital we both felt more reassured that our baby would be alright, but at the back of our minds we knew that whatever the outcome it was going to be a bumpy ride and that our son was going to have major surgery if he was to survive.

On the 24th January 2002, at 8:30 am, Clare was induced due to high blood pressure. It was decided that this would be best, since the delivery team would have everything prepared in order to give our son every possible chance. The contractions came on quick and strong, and it wasn’t long before Clare requested an epidural. Eight hours later our son Lewis was finally born vaginally with the use of forceps. He made his entrance at 5:04 pm, weighing in at 6 lb 14oz.

Our son was beautiful, and he even managed a little squeak before being swiftly whisked away to the other side of the delivery room. The delivery team worked fast, and we were soon given the thumbs up that he was stable. Neither of us was able to hold him or touch him, but we were given another quick glimpse of our gorgeous son before he was taken to SCBU.

While Clare was recovering from the birth, we were informed that Lewis was doing well and only required 40% oxygen. After about an hour, Clare was feeling up to visiting Lewis, and doctors said that he was settled enough for us to see him. The walk to SCBU was nerve-racking, not really knowing what we were about to see. It was quite strange really because you tend to look past all the tubes and wires and look at the beautiful person underneath, and at that moment we were so proud of our little boy, and we felt so blessed to have him even though his future still hung in the balance.

That night the local chaplain came at our request to christen Lewis. He was surrounded by immediate family who all loved him very much, and the short service was very moving for all. Lewis was sedated and remained stable during his first night, so the decision was made to transfer him to Alder Hey Children’s Hospital Liverpool the next morning in preparation for his surgery. We knew all about ECMO and nitric oxide and were so relieved that Lewis was stable, needing oxygen only, and the transfer took 40 minutes without any problems. As soon as Clare was discharged, we rushed over to be with Lewis, and the nurses looking after him said that the surgeon was happy to repair his diaphragm the next day. We settled into our room at the Ronald McDonald house that evening and prayed that everything would go smoothly. The next day Lewis was wheeled down to theatre at 4 pm. It was so emotional watching our son being taken away, not knowing if we would ever see him alive again, although the nurses were very reassuring. Four agonising hours passed, and Lewis finally returned to ICU. He had made it, and the surgeon said that everything had gone as planned and that the defect was large and needed a gortex patch to cover it.

Lewis's honeymoon period lasted 48 hours, and after that, things seemed to improve. He had good blood gases, so they started to wean down his oxygen. Lewis was proving to be a little fighter, and we were both so proud of him. Apart from being a little jaundiced, he looked settled. Feeding started on 5 mls of breastmilk every 3 hours through the use of an NG tube. He tolerated it well at first, and it soon went up to 40 mls. Lewis continued to do well, and on day 6 of his life, the doctors decided to try him off the ventilator. We were so happy and excited that we might get to finally hold our beautiful son. Our hopes were soon dashed as Lewis lasted only 12 hours off the ventilator before being put back on. His chest was recessing too much, and his breaths per minute increased. We came to the conclusion that it was just too early for him, but it was very hard seeing him with all the tubes taped to his face again. He so nearly made it to the next step, but we weren't disappointed with him. The doctors told us that he had done extremely well to come this far, and that it was only a matter of time before his lungs would expand enough for him to breath independently.

The next few weeks were up and down. Some days Lewis would appear to be improving, only to find him getting worse the next day. Desaturation became a major problem some days, as did distention of his stomach. He also caught an infection from his central groin lines, a combination of all these problems ended up with Lewis's oxygen levels increasing. It was really depressing watching all the other sick children come and go while we still came day after day to be with Lewis. We had to be patient; the doctors kept telling us, “It just takes time.”

On the 9th February, Lewis's condition started to deteriorate. His stomach would suddenly fill with air and distend, putting pressure on his already immature lungs. This made it really hard for him to breath. His feeds had stopped because of severe vomiting, and as a result, he was put on TPN. The nurses had to keep aspirating the air every hour or so by a syringe on the end of his NG tube. Seeing the pain in his face was really upsetting. He hated it when the pysio's cleared his tube with suction. He would lash out, and his sats would drop. I remember one day when his oxygen input was at 100%, and he was doing very little breathing on his own. The doctors told us there was a possibility of pyloric stenosis or malrotation of the stomach, which would have explained the vomiting and stomach distention. Lewis had an ultrasound scan which looked normal; we were so relieved, but the problem still couldn't be explained. They gave Lewis a Barium Dye Test, which showed that there was an obstruction in his tummy, and that it seemed to move in spasm, which explained why he was so uncomfortable. The surgeons decided to operate on Lewis again, but the operation would carry a risk of infecting his patch. We really didn't want him to be operated on again, but this was the only way they could help him.

During the operation the doctors found that Lewis had a kinked duodenum because his stomach was lying abnormally and that he also had a lot of scar tissue adhesions. After finding the cause of the problems, they then straightened his duodenum and removed the adhesions. They also fitted a broviac line into an artery in his chest. After 6 long hours, we were able to see our son again. He hadn't tolerated the surgery as well this time, and he looked grey and lifeless. The doctors told us that despite how he looked, the operation had gone well, and that he was now on less oxygen than previously (55%).

Over the next few days, Lewis slowly recovered, his bowel and stomach had been handled so much that they temporarily shut down to recover. The colour of his stomach acid was checked regularly and changed from dark green to pale yellow, which was a good sign, and as soon as it changed to yellow, feedings started again. During the week following his operation, Lewis made a speedy recovery, which was a shock to us all considering he had been so ill the week before. We could hardly believe that just one week post-op, he was saturating at 100% without any help. It was such a big step after four hard weeks, and amongst all the joy, we both prayed that he wouldn't have to be reventilated.

On Friday 22nd February 2002, Clare and I finally got to hold and cuddle our son for the first time ever. He was so peaceful and settled, it was an unforgettable experience, and we both felt so overwhelmed and lucky to have him in our arms. That day Lewis was transferred onto a ward where we all started to get to know one another. He started to increase his feeds, gained weight, and finally got rid of all his tubes and lines. The week spent on the ward was a completely different experience to being on intensive care. We finally felt like parents to a newborn baby. Lewis was discharged from hospital on March 4th 2002, and it couldn't have been a better day as it was my birthday. It was the best birthday present a father could ever have. The three of us were now a proper family, and Clare and I were very excited to get our son home 5 weeks and 4 days after he was born.

Lewis has been home now for 8 weeks, and so far there have been no major problems. He doesn’t seem to suffer from reflux, and apart from being a snacker and having pretty bad colic, he feeds quite well. Although he's gaining weight at a good pace (about 1oz per day), he is small for his age at 10 lb 3oz, but we are hopeful that he will eventually catch up. He's had three colds since we came home, and Clare and I have been really anxious and worried but they haven't seemed to bother him any more than any other baby. His scars have healed really well and are shrinking as he gets bigger, and he is right up to date with his development. All in all, Lewis is a very alert 3-month-old who enjoys playing on his activity gym. The whole family loves him to bits, and he is a very spoilt baby but with good reason. Both family and friends, especially the grandparents, can't believe how well he's done, and we all cherish every moment with him. We thank god for letting us keep hold of our son. Clare and I believe he is truly a miracle, and we are so grateful to have him in our lives today.

Written by Lewis' parents, Mark & Clare Kelly (Great Britain)

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