ADVOCATING FOR YOUR CHILD This summer we received a copy of the following letter from a parent who explained that they had sent it to the administration and surgery clinic at the hospital where their daughter had been seen. They continued, “If it will save anyone from going through the same or a similar thing, we would like it to be published.” We are sharing it in the hope that you will find it helpful. July 8, 2023 M. has asked us as her parents to write this letter not only to support her, but also in hopes that no other patient will have to endure what she has gone through the past couple of years following complications of her central vascular line (CVL) placement. M. has a rare form of intestinal failure called neuropathic chronic intestinal pseudo-obstruction, diagnosed at approximately four months of age. She requires parenteral nutrition (PN) to maintain nutrition and thus her life. M.’s first central line was placed in her right internal jugular in September 2007, while she was a patient in the NICU. The external stay suture was removed while she was still in the NICU. This line lasted until April 2009 when it fractured over the clavicle due to her growth. In April 2009, a new CVL was placed in the left subclavian. Again, the external stay suture was appropriately removed within the first two months after placement, at a clinic visit. Amazingly, despite several repairs, M. kept this line until February 2014, when it fractured near the exit site. It was replaced, again in the left subclavian. The right subclavian was attempted but could not be used at that time. And again, the external stay suture was removed during a subsequent clinic visit, within the first few weeks to months following placement.
“Maintaining central line access is critical to M.’s survival.” M. was able to keep this line for approximately five years, which we are told is unheard of and is a testament to the excellent home care she has received. Maintaining central line access is critical to M.’s survival. She has only had one line infection, and it was successfully treated while preserving her central line (it did not have to be pulled). This line began leaking internally in August 2019 and required replacement on her twelfth birthday. The new line was placed in the right
subclavian. M. was pre-pubescent, having no breast tissue, at the time of this surgery. It certainly could have been anticipated that she would continue to grow as she previously had and that she keeps a central line on average of three to five years. And we know, based on her history, that she will likely need a line the rest of her life. To our recollection no follow-up appointment was made following this line placement. For some reason, the external stay suture was left in. As M. continued to grow, beginning around June 2020, granulation tissue began to grow at the exit site. The site was red and sore and M. had mild pain, which she dealt with on her own as she was told this was “normal” and there wasn’t anything that could be done. The suture could have easily been removed at this time. In October 2021, the pain, discharge, and redness became so bad that we went to the ER with concern of a tunnel infection after speaking with the GI team that managed M.’s care. Blood cultures were drawn, and we were told there was nothing that could be done other than taking ibuprofen or Tylenol. M. is unable to take ibuprofen due to GI bleeding and we try to avoid Tylenol because she has some PN-associated liver issues. M. was told that she should not be experiencing any pain because sutures, central lines, and granulation tissue “do not cause pain.” We were scheduled to go to the surgery clinic in October. There, we asked that the suture be removed because it seemed to us to be the main cause of the granulation tissue. We were told that the suture could not be removed because it “was holding the line in.” We had never been told this before and assumed that something had changed or was different with this line than every other line she had previously had. In other words, we trusted and believed what we were told. CONTINUED ON NEXT PAGE VOLUME 44, NO.4 | WINTER 2023/2024 ISSUE 15
