Parenting a child with CLOVES • by Julie, a CLOVES mother

My daughter asked me to write about what it’s like to parent a child with CLOVES Syndrome. When I started to think about what to write, I realized how hard it is to put into words as it is such a unique experience given the rarity of CLOVES Syndrome.

Our journey began when Lindsay was born—we knew right away that something was not right with her. Her right foot was very large, and she had a birth mark and excess fatty tissue on her abdomen. The birthmark didn’t worry me as much as the large foot did.

She was diagnosed with Proteus Syndrome before she left the hospital. We were told that her foot could continue to grow and that other parts of her body may grow out of proportion as well. This was a frightening thought, and I would worry that it was going to affect her face or other parts of her body. This worry of the unknown can be frightening and even crippling to your life. The unknowns were daunting—would she be able to walk? Would she be able to attend school? Would she have any developmental delays?

Those first few years were very trying for both my husband and me. There was little known about Proteus Syndrome at the time. Fortunately, we had a wonderful orthopedic doctor that helped us enormously along the way. She had several surgeries to stop the growth of her toes and foot bones—our doctor hoped this would prevent her foot from growing larger. And luckily, it turned out her foot grew slower, not growing much larger than expected. When exploring all of our options, we were given the choice of amputation, but we decided we wouldn’t pursue that as long as her foot was functional. She was able to run and walk without issues, and she played basketball and soccer when she was young. Why amputate a perfectly functioning limb that didn’t interfere with her daily life?

Once we went through the difficult stages in Lindsay’s early life, we realized we just wanted her to have a normal and happy life. I was able to focus on the positives through my faith, to which I give credit for getting me through difficult issues with Lindsay. I protected her as a young child, but when she was old enough to ask questions about her condition I decided I would be honest with her yet always focus on the positives. She has asked me many difficult questions, and I told her I would always be honest with her about her syndrome. I believe it was important for her to know that and give her own input in her treatment options as she got older.

Lindsay was not diagnosed with CLOVES until she was 14 years old. It was purely by accident that we got the diagnosis. I was a member of the Proteus Syndrome group and went to their conferences every 1-2 years.

I realized early on that Lindsay did not have Proteus Syndrome. At one of the conferences, I sat down with a doctor with her medical records, and it was evident that she did not actually have Proteus. I remember asking one of the expert doctors of overgrowth syndromes what he thought Lindsay had, and he said she probably has her own individual syndrome. This didn’t answer our questions or ease our fear of the unknown.

I still kept in touch with the Proteus Syndrome group and went to all the conferences despite the fact that Lindsay was told she didn’t have it. I met Dr. Mulligan, a wonderful doctor who spoke on vascular malformations. I spoke with him after a conference and discussed Lindsay, as we were told her malformation couldn’t be operated on because she could bleed to death. At his direction, I sent her medical records to Boston Children’s Hospital. They reviewed her records and stated they would not do anything different and to continue our course.

Several years later, Lindsay’s malformation would bleed often, and it was difficult to get the bleeding to stop. It became very embarrassing and worrisome for Lindsay. I called Boston again to see if anything could be done to control the bleeding, again sending her records for the Wednesday review among the clinicians. I received a letter back stating they felt she had CLOVES Syndrome. It was a shock for us and a little out of nowhere, but at least we now had a diagnosis for Lindsay. With this incredible news, we then began to research CLOVES Syndrome.

We planned a trip to Boston to see the group of doctors that defined CLOVES Syndrome. It was unbelievably comforting to finally have a team of doctors that understood Lindsay’s condition. I can remember one of the doctors on the team, Dr. Fishman, asking Lindsay if she wanted her vascular malformation to be gone. Lindsay, knowing the doctors in Pittsburgh were never able to do anything about her abdomen, looked at Dr. Fishman in shock. She was astounded that a doctor was telling her that he could, in fact, remove some of that fatty tissue from her abdomen. When Lindsay left that first appointment with the Boston team, she said, “Well, I guess all the doctors in Pittsburgh are amateurs!” We still laugh when we think of that moment.

Sidenote from Lindsay: The doctors in Pittsburgh are very far from amateurs and very professional, skilled medical professionals – this was just said in jest reacting to shocking news as a 14 year old!

Lindsay then had surgery in Boston that went very well. They removed the part of her vascular malformation that was giving her so many bleeding problems. It changed all our lives. It is frightening to know all the aspects of the syndrome but comforting to know there are such dedicated doctors who are experts in treating CLOVES. We lived many years without that comfort and were thankful to now have that expertise.

Another very difficult issue for children with CLOVES or any overgrowth syndrome is dealing with the rude people that stare at your child. I would find myself standing in front of Lindsay so the rude person couldn’t see her and then watch that person proceed to move again to continue to stare. It is disconcerting to see how impolite people are. I finally decided that I couldn’t control the way these people were, but I could help my child learn to deal with them. I would tell her they may look at her because her foot was different, but it was not okay for them to continue to stare.

We would just stare back, and as she got older she grew confident enough to ask them what they are staring at. Funny enough, it usually embarrasses the person. She still deals with this issue and will probably always have to deal with it, but luckily Lindsay is not ashamed of her foot and leg. She still goes to the beach and doesn’t fret about covering her foot despite the fact that she still receives a lot of stares. Sometimes if someone asks her what happened to her foot, she’ll give them an outlandish story like she got attacked by a shark. In her eyes she thinks, who cares? If I’m going to get these questions all the time, why not have a little fun with it?

One time on the elevator at the beach, a lady told her how beautiful her feet were. We were shocked and quite frankly didn’t know how to react to that comment. It was a rare act of kindness. I wish people were more compassionate with people that look different, but unfortunately, it is not the truth of this world.

I think the most important thing when raising a child with CLOVES is to support them and make sure we focus on the positives to give them confidence in themselves. We always focused on the positives even during the difficult times. We let Lindsay acknowledge that it stunk to have CLOVES but didn’t allow her to dwell on it. She was lucky enough to have four friends that she’s known since childhood, and they were very protective of her.

Her teenage years were a difficult time for her personally, but she did have a fairly normal high school life thanks to her protective big brothers and supportive group of friends. She attended college and was shocked to find that nobody cared that she had a large foot. She was amazed that the students in her dorm didn’t stare or ask about her foot. I believe it was in college that she realized CLOVES didn’t define her life.

There is an enormous fear of the unknown when parenting a child with CLOVES, and we as parents have to be vigilant and make the best educated decisions to treat our child. We are fortunate to have the CLOVES doctors and the support of the CLOVES community now. We have to focus on the fact that they are very special kids and they will grow up to be amazing adults!

Looking back, it was an up and down journey raising Lindsay but a very rewarding one. I find that Lindsay is a very special and caring person. I think her dealing with CLOVES growing up made her the compassionate and loving human being that she is today.