CLOVES Syndrome

Today is CLOVES Syndrome Awareness Day!

We discovered there was a problem with our baby at my 20 week ultrasound, but didn’t receive the CLOVES Syndrome diagnosis until she was 5 months old.  All individuals with CLOVES Syndrome are unique, and have different characteristics.  Tessa has several masses in her trunk, upper right leg, and groin area.  She also has many port wine stain birthmarks, abnormal lymphatic and venous channels, and epidermal nevi.  She also suffered from severe anemia and GI complications. Thankfully, when Tessa was almost 2 years old, she was put on Peptamen Jr. through a feeding tube, and that formula has done wonders for her.  It corrected her anemia, allowed her body to absorb lymphatic fluid that had been collecting in her abdomen, and healed her GI tract.  She continues to drink the formula orally, and has not had further complications. In addition to the formula, she also takes a medication called Sirolimus two times daily.  This medicine has been successful in managing pain and overgrowth in individuals with CLOVES Syndrome, and has seemed to be a help in managing Tessa’s.  

Tessa sees a multidisciplinary team of doctors at Mayo Clinic in Rochester.  Thankfully, for the past 2 years we have only had to make check up visits because she is doing so well right now.  She does require a blood draw and urinalysis every few months, but those visits seem to be getting *slightly* easier.

Tessa has come a long way the past four years, and has had some miraculous healing.

We can never say thank you enough for all the prayers that have gone up for her.

One of the hardest aspects of dealing with CLOVES Syndrome are the unknowns.  I have not met anyone with malformations in the groin where Tessa’s is, and would love to have some insight as to what to expect in the future.  Her malformations there are growing, but a surgery would come with a handful of complications so we would rather continue to push it off.  Even her doctors aren’t sure what the best course of action would be: to wait until surgery is absolutely necessary, or try to stay ahead of the overgrowth.  For now we have decided to wait.

There are also many CLOVES kids who suffer from GI complications and doctors don’t know why.  Tessa’s doctors don’t have answers for why her body is unable to absorb nutrients, and tried several things before (thank goodness) the Peptamen worked of her. But Peptamen hasn’t been successful for other patients.  As one doctor at the CLOVES Family Conference said last year: “The GI field for CLOVES Syndrome is wide open, we just need physicians willing to take it on.”

We are so thankful for the CLOVES Syndrome Community organization, and their tireless efforts to bring awareness and support to patients and families.  I have met many families who have shared insight and encouragement with me, and I hope that I can do the same for others.  If you are ever interested in helping an organization, a simple way to do this is by shopping at Amazon!  Which, we’re basically all doing right now.  If you go to smile.amazon.com, you can choose an organization to support when you are shopping.  CLOVES Syndrome Community is one that you can support, and would  greatly appreciate your contribution as they seek to find ways to better help those dealing with this syndrome every day.  💚

Also sending out a Happy Anniversary to my brother and sister-in-law, who were married on this day two years ago! My brother and his groomsmen all wore clover socks in honor of the day.  💚

We love our spunky little CLOVES warrior, and continue to trust in God for her future.🍀

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