Featured cherub of the week is Liz Plakholm. Liz is a 16 year old survivor of CDH. On June 18, 2018, Liz held her 6th Annual Walk for CHERUBS. It was a huge success! She has raised more than $14,525 in total over those 6 years. Liz is the daughter to our Canada Representative, Amanda Plakholm. We appreciate both mom and daughter for all they do for CDH Awareness and volunteering for the charity.
Amanda Plakholm wrote this about her daughter, Liz:
“When we found out we were pregnant we were excited and nervous because this was our first baby. Thinking of painting the nursery and all the items we would need to buy were our biggest concerns. Then I went for a routine ultrasound at 12 weeks pregnant and the technician gave me a bad feeling, I knew it wasn’t in my head when she called in a doctor to look at the baby on the monitor. No questions were answered but I was told I would hear from my doctor in the next 24 hrs. As I left I couldn’t keep it in any longer and sat in the car by myself and cried wondering what they saw. I drove back to work and called my husband and told him something was wrong with our baby. That afternoon my doctor called us to come in and told us about our babies CDH and that she would transfer our care to McMaster Children’s Hospital.
Our first appointment at McMaster involved having an ultrasound, meeting the surgeon and the team of doctors who would be involved in our care as well as a geneticist. We had an amnio and the 7hrs at the hospital was overwhelming and exhausting. That day on the way home I decided I wanted to find out the baby’s sex and name the baby so I could feel like I was able to bond better. We had so many appt’s and fears that the joy of being pregnant was over for me.
Fast forward to 38 weeks and I was induced to have my daughter Liz. With a room full of medical professionals my daughter was born and after a brief touch of her arm she was whisked off to another room. When they took my baby girlI had went into the bathroom to be alone and cry. We had many scares along the way but because I never took notes, I have no dates or specifics. We were told after 6 weeks that the doctors never thought Elizabeth would survive. We took her home with only feeding issues and concerns about weight gain. We had a good pediatrician who made sure we were followed by a speech pathologist and an occupational therapist.
For 6 years we thought we were done with CDH because Liz was doing well and other then watching for bowel obstructions we were told we had nothing to worry about. When out of blue Liz started having abdominal pain, headaches, nausea and lethargy. The school would call every other day and there were days she wouldn’t get out of bed. It took months, tons of tests before our GP consulted with a local surgeon and he recommended a CT scan. This is when they found a section of Liz’s bowel was going into her diaphragm through the hole in her patch, she had reherniated. We had to wait for areferral back to McMaster and when that appt came our surgeon told us he never had a CDH reherniateso he was a little skeptical. After many months of waiting and feeling awful Liz had her repair surgery done laproscopically and started to feel better.
Feeling good lasted a little over a year for Liz and then she had similar symptoms again; a MRI showed that Liz had a duplication cyst on her stomach. The surgeons plan was going to be to remove the duplication cyst, gallbladder (she has 3 gallstones) and check her patch and make sure there were no holes. We were prepared for a short stay on the hospital because surgery was going to be laparoscopic. After 5 hrs of surgery Liz had the duplication cyst removed but still had her gallbladder, her patch looked good other than her spleen and stomach were pushing it up and into her chest cavity a bit. The next day went okay until the evening when Liz started having trouble breathing she was complaining of constant pain. By the next morning they had moved her to step down where there is a nurse for every 2 patients. Liz was hooked up to oxygen and had an emergency CT scan, they found she had a stomach perforation and the fluids she was drinking were going into her abdominal cavity. Liz was taken for emergency surgery to repair the perforation. After surgery Liz was put in ICU and kept sedated on day 5 of Liz’s hospital stay we walked into ICU and instantly knew something was wrong, her stomach was hard and bloated. The surgical team was called and they did a GI study and discovered another perforation. Liz was off to surgery again so in all she had 3 surgeries in 5 days. We spent 6 weeks in the hospital and Liz never really got back to normal. After 5 months of trying to figure out what was wrong a CT scan showed Liz had an abdominal infection, there was a pouch of infection at her patch. Liz was admitted and put on IV antibiotics; she ended up going home with IV antibiotics for a month.
Since these surgeries and all the complications Liz has had lots of ups and downs. We are currently dealing with very bad reflux that meds don’t seem to help; she goes for a scope this week to see if acid has caused any damage. Liz has 2 days a week were she has nausea and abdominal pain and she is always tired. CDH will never go away for her and will impact her life forever because of the amount of medication she needs and the scar tissue pain she is constantly dealing with.”