Early Signs Of Lymphatic Malformation
“October 2021, we welcomed our third child and first son into the world. We had a beautiful birth in the comfort of our own home accompanied by midwives. Our sweet baby boy was born healthy, weighing 8lbs 11oz with no complications.
When Hunter was about a week hold, we noticed his breathing seemed raspy and louder than it should be. Not long after this, we also noticed a golf-ball-sized lump on our little baby’s neck. It was very alarming, to say the least. In his first month of life, we had two trips to the ER. Both visits were horrible.
Due to Covid restrictions at the time, only one parent was allowed in; my husband couldn’t be with us. Here we were with our brand-new baby in the ER, and I had to sit alone and scared without my husband’s support. Equally painful on his side was sitting in a hospital hallway separated from us.
After the second visit, we were sent home with a diagnosis for the raspy breathing, and then what later would come to light as a misdiagnosis on the large lump (cyst) that appeared suddenly. We spent the coming months getting used to his loud breathing; he was otherwise a healthy happy boy. We were told that both issues would resolve themselves most likely as he grows. Laryngomalacia, aka floppy voice box, and a benign cyst.
In April, at 5-months-old, Hunter’s neck swelled so large that it was compromising his airway. We went back to the ER at our local children’s hospital. This time we were admitted to the hospital, and my husband was able to stay with us.
This was a very challenging time for us. Both as business owners and parents. We had to spend a week away from our two daughters, and my husband had to juggle working while also being there for myself and our son. We are so lucky to have an amazing family that helped with caring for our daughters during this time. I cannot imagine how hard it might be for a single parent, or someone without family to help them through these hard times.
The nurses at McMaster were all so kind and friendly making the best of our stay. Hunter was quite the charmer with his big smiles and easy-going personality. His doctors and nurses couldn’t believe how he remained calm and happy through everything.
Lymphatic Malformation Diagnosis
During our hospital stay, they had to drain his neck and perform an MRI to figure out what was going on. They drained 90 ML of fluid from his tiny little neck, allowing him instant relief, as I am sure you can imagine! The MRI results were reviewed by the pediatric radiologist, and Hunter was diagnosed with a Lymphatic Malformation or Lymphatic Birthmark as our doctor likes to call it.
We were relieved to finally have an accurate diagnosis, but also very overwhelmed with the information presented to us. Thankfully, the pediatric radiologist at McMaster hospital was very experienced and knowledgeable on this health condition. Given this health condition is somewhat rare and there is no permanent cure, we found some comfort in knowing our son was in good hands.
The safest treatment option for Hunter’s lymphatic malformation was a procedure called Sclerotherapy. Unfortunately, at the time of our hospital stay in April, a procedure could not be done due to the cyst already being drained.
What Is Lymphatic Malformation?
A lymphatic malformation is a rare clump of abnormal lymph vessels that form a growing, disorganized, spongy cluster of cysts. There is not really a known reason why this occurs; it is something you can just be born with.
We were discharged from the hospital and happy to get home. It was a relief he could breathe and be comfortable again, reunited with his sisters. However, the days after our stay were tough. I went through a rollercoaster of emotions. Wondering what went wrong. Why did our perfect baby boy have to go through this? I obsessed over keeping him safe and healthy, afraid something might happen to him.
As most parents would, I spent hours researching online, trying to find other parents who had gone through the same experience as us. Being a rare condition, none of our friends, family, or even healthcare providers had ever heard of this.
We learned this is something we needed to accept for the rest of his life and not to treat him any differently because of it; for myself, this meant not treating him like he is fragile. We also learned it varies case to case; everyone with lymphatic malformations has very different experiences. Given it affects the lymphatic system, things like simple colds and viruses at a young age can cause flare ups. But as Hunter grows bigger and stronger, the flare ups should be less often or severe.
I cannot speak highly enough of Hunter’s doctor at McMaster; he was prompt to answer my many questions that came after. My husband and I came to the decision we would wait to have any procedures done on Hunter until he was older, if needed. We did not feel comfortable putting him through sedation at such a young age unless necessary.
The universe had other plans for us though. Exactly a month later, in May, we found ourselves back in the ER. His neck had swelled up quickly, again compromising his airway. We were admitted to the hospital right away, and Hunter was booked in for Sclerotherapy treatment. We were calm, knowing that we were in good hands, but going into the procedure I was terrified. Again, being business owners during our busy season, my husband had to be at work. Any serious decisions and updates had to be done over the phone. They let me stay with Hunter in pre-op, and then I had to go wait while they sedated him and performed the procedure.
When the doctor came out to let me know everything went well, it was a huge wave of relief. It still amazes us how strong and brave our little guy is; he didn’t even need any pain medication!
Again, throughout this difficult time we were so thankful to have family who looked after our daughters. Family and friends who helped with meals and messages making sure we were okay. I believe being surrounded by so much love and positive energy helped us through it.
One day, when Hunter gets older, we will tell him about how all the nurses loved him and the impression he made with his contagious smiles. I think he can handle anything life throws his way. Now at 9-months-old, he is healthy and thriving! We haven’t had any more hospital stays. He still has the biggest smile and adorable giggles. His most recent check up showed no need for anymore treatments. If he needs treatment again down the road, we know he will be well taken care of at McMaster. I have learned to loosen up and not worry so much. Hunter is a strong little guy.
Advice For Lymphatic Malformation Parents
A benefit to social media is I have been able to connect with some other parents who have experienced the same health issues with their children. It is really comforting knowing you aren’t alone and someone is going through the same things you are. I’ve been able to share the knowledge I have gained and give some reassurances from our own journey.
If anyone reads our story and might be going through the same thing, I am always happy to meet new people and talk! There is also a Facebook group for Lymphatic Malformation Awareness.”
This story was submitted to Love What Matters by Lindsay Helsdon of Ontario, Canada. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories like this one:
‘Will she survive? Will she breathe?’ This was it. There was no turning back. I heard her loud cries.’: Mom births baby with Lymphatic Malformation, condition makes her ‘love her little girl so much more’
‘Something isn’t right.’ I looked into my husband’s eyes. As I slowly shifted our son’s head, I saw an enlarged cheek.’: Mom ‘never knew’ about newborn’s lymphatic malformation until birth, ‘We were numb’
‘Before the doctor punctured my belly, my husband looked to me. ‘Do you wanna know?’ My fairytale pregnancy was being ripped apart.’: Mom’s devastation over shocking Lymphatic Malformation diagnosis leads to ‘pure bliss’
‘The growth is very large. There’s a chance the baby may not survive.’ Right then, reality hit me. All the fear and nerves I carried through my pregnancy hit me all at once.’
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