In October 2021, we were joyful to welcome our third child and our first son into the world.
We had a beautiful home birth with the help of midwives. Our baby boy, Hunter, was healthy, weighing 8 pounds 11 ounces, and everything looked flawless.
When Hunter was about a week old, we noticed his breathing signaled rough and louder than usual. Soon after, we discovered a golf-ball-sized swelling on his neck. It was scary. Within his first month, we had two trips to the ER, both stressful and overwhelming.
Due to Covid limitations, only one parent was allowed with him. I had to sit alone in the ER while my husband waited outside in the lobby of the hospital.
It was heart touching to be far from each other and from our baby. After the second visit, Hunter was sent home with a diagnosis for his harsh breathing and what we later discovered was a misdiagnosed lump. We were told he had laryngomalacia, a flappy voice box, and a kind cyst, and that both issues would probably recover as he grew.
By April, when Hunter was five months old, the lump on his neck had grown so huge it was making it difficult for him to breathe. We rushed back to the ER, and this time he was admitted to the hospital. My husband was finally allowed to stay with us.
This was a hard part of time for us. We had two daughters at home, and we had to trust on our amazing family for help. As business owners, my husband had to manage work while supporting us in the hospital. I cannot imagine how much harder it would have been without our family’s support.
The nurses at McMaster were very kind, and Hunter lucky everyone with his smiles and calm nature. During his stay, doctors drained 90 milliliters of fluid from his neck, giving him speedy relief. An MRI revealed that he had a lymphatic malformation, sometimes called a lymphatic birthmark. It was a relief to finally have a proper diagnosis, but we were also overwhelmed.
Hunter’s condition is intermitted, and there is no permanent cure. The safest treatment is a procedure called sclerotherapy. During this first hospital stay, the procedure couldn’t be done because the swelling had already been drained. We went home happy to see him comfortable again and reunited with his sisters.
The days afterward were emotionally killing. I worried always about keeping him safe and healthy. I spent hours online, trying to find other families who had gone through the same thing. Because it is rare, few people we knew had ever heard of it.
We learned that Hunter’s condition would likely be a part of his life. We also learned not to treat him as delicate. Each case is different, and as he grows, flare-ups from negligible illnesses should become less common. We decided to wait for any further actions until he was older except unconditionally needed.
A month later, in May, Hunter’s neck swelled again and negotiated his airline. He was admitted immediately and arrange for sclerotherapy. I stayed with him in pre-op while he was under for the procedure. When the doctor came out to say it went well, I felt a huge sense of relief. Hunter was so brave and didn’t need any pain pill.
Throughout this journey, we were grateful for our family and friends who helped with our daughters, meals, and support. Their love and positive energy made a huge difference.
Now, at nine months old, Hunter is blooming. He hasn’t needed more hospital visits, and his checkups show no further treatment is needed for now. He still has the biggest smiles and cutest laughs. We’ve learned to relax a little and trust that he is strong and hardy.
Connecting with other parents through social media has been cheering. It helps to know we are not alone and that others are facing similar challenges. I share our experiences to offer support and comfort.
If anyone reading this is going through the same state, I am happy to connect and share what we’ve learned. There’s also a Facebook group for Lymphatic Malformation Awareness where families can find support and guidance.
