A guest post by Aran Hissam on fetal therapies

Did you know that babies can have surgeries before they are born?

Well, they can and in some cases, it saves the life of the baby who would otherwise die before birth, or shortly after.

The field is called fetal therapies and it’s relatively new to the medical world. As a result, it’s severely underfunded.

I’m trying to change that.

My name is Aran Hissam and just like many of you, I’m a parent.  A question that I’m often asked that is very difficult to answer is, “How many children do you have?”  I have to take a deep breath, clear my throat and say, “I have two boys here with me and my daughter is in Heaven.”  Even after six years it doesn’t just roll off my tongue.

In August 2011, my husband and I were thrilled to find out I was pregnant with our third child. We already had two boys and while I was praying for a healthy baby, deep down I was also hoping for a girl.

In November, at 18 weeks pregnant, my husband and I were given the devastating news that our unborn daughter had a fatal illness called non-immune fetal hydrops. This condition is caused when abnormal amounts of fluid build in two or more body areas of a fetus or newborn. In our daughter’s case, it was in her lungs and stomach and the fluid prevented her lungs from developing.

After meeting with dozens of doctors and praying for a medical miracle, we were given hope by a team of specialized surgeons, nurses, and healthcare professionals to continue the journey with our daughter, Brianna. We knew the odds of survival were slim, but all of Brianna’s genetic tests came back normal and her other organs were growing and functioning as they should.

We knew we had to continue to fight for her.

I had three serious fetal surgeries between her diagnosis and birth (at weeks 29, 31 and 36), one of which had never been done on a baby with fetal hydrops before. A total of four shunts were inserted into Brianna’s chest cavity and a device known as an intraluminal tracheal occlusion was placed through Brianna’s mouth to promote her lung growth. These operations were performed by Dr. Ruben Quintero, a fetal surgeon and the inventor of the device used on our child.

Our daughter Brianna was born on March 16, 2012 at 36 weeks and 6 days. She was with us for 15 of the most memorable hours before God took her back as his angel. Brianna ultimately died of cardiac and pulmonary failure. We, along with our team of doctors, learned a great deal about fetal lung development and growth while on our journey with Brianna.

A parent can never fully prepare for the loss of a child. There will forever be a hole in my heart left by her absence, but I would not change a thing that was done during my time with Brianna. I got to know her on an intimate level as mothers do with their babies.

I have wondered over the years since we lost her, though, if we’d known just a little more… if the members of our medical team had just a few more tools or procedures at their disposal… what would our situation have looked like?

I started fighting for a better outcome for my daughter the day I learned her diagnosis, and I haven’t stopped since. In 2012, my husband Patrick and I established a non-profit in Brianna’s honor which helps fund research for different types of fetal interventions and surgeries. To date, our organization and its generous beneficiaries have raised $250,000 for furthering research for fetal therapies like the ones used to fight for Brianna’s life.

Some accomplishments of the Brianna Marie Foundation so far include collaborations with and funding provided to:

• Harvard/ Boston Children’s Hospital (October 2017) — new imaging techniques and better diagnosing capabilities
• Johns Hopkins University– new preparations for fetal surgeries
• University College of London Institute for Women’s Health- studying a medication that will help to grow fetal lung tissue when a baby is diagnosed with fetal hydrops or compromised lung growth
• Fetal Outcome Trial– a study that proved the success of fetal surgeries and looked at the parity of cogitative development of a child that received surgery verses one that did not have a fetal surgery.

Through the organization, I’ve also found some peace in being a resource for parents that are walking in our shoes. I’ve been able to give advice to families that feel helpless and have referred them to people who could help.

No one should ever feel alone on this journey. If I can help just one baby, my mission will be accomplished. I just pray that research prevents other families from having to go through the heartache that we have endured.

It took some time after Brianna’s passing to really know why I was chosen to go on this journey but I now feel it is my mission to advance the field of fetal medicine the best I can.  I’m just a mom on a mission to help others not feel alone and in doing so, I hope to continue to honor my daughter. I want everyone to know there is hope and that this emerging field of medicine exists and can assist in a time of desperate need.

Each March on what would be Brianna’s birthday weekend our organization hosts a 5K run which is our major fundraiser. The run both honors babies lost while inciting progress in the field of fetal therapies. This year’s event is on March 10, 2018 and we welcome you to join us if you are a local OR we hope you will consider participating virtually with our virtual run option.  You can run a 5K from anywhere, report your time to the foundation and be eligible for a medal.

To learn more about our organization or to register for the 5K please go to:  www.briannamariefoundation.com

 

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Category: Babies

Tags: Aran Hissam