Grace's Story | A journey through life with a Hypothalamic Hamartoma
Defining a new normal and finding happiness while living with a debilitating condition
A Christmas Blessing
Perry and I had married in early 2002 with the hopes of beginning our family immediately. Unfortunately, we experienced two back to back miscarriages in 2002 and we felt the dreams of a family were slipping away from us. We decided to seek the help of a fertility specialist before moving forward. The doctor was able to determine that I had a slight blood clotting issue which was contributing to the miscarriages and felt it could be resolved successfully by taking a baby aspirin everyday. In April 2003, our prayers were answered when I became pregnant with Grace.
The pregnancy was watched carefully by our doctors until the first trimester ultrasounds showed a growing and healthy baby. During the second trimester, I had several routine tests completed including an AFP, which screens for potential birth defects. It was not a mandatory test, but due to our family history with spina bifida we felt it was important for us to do this for our baby. The test was routine and we honestly were not worried about the results as we didn’t expect anything to show up. Within a week or so, I received a call from my OB|GYN explaining the test came back positive for Down Syndrome. It showed a 1:10 chance for Down Syndrome, however, only an amino would be able to confirm these results. Due to our history of miscarriages, we decided not to have the amino and instead educated ourselves on Down Syndrome and prepared our world for any special needs our baby might require.
Grace Katherine Webster was born on December 24, 2003. She was absolutely angelic. Our first question after her birth was whether or not she appeared to have Down Syndrome and the doctors indicated that she did not. Grace did well the first night in the hospital and we were allowed to take our little angel home on Christmas Day. The first few weeks were difficult as Grace wasn’t gaining weight as we had hoped. We were instructed to track the ounces she was consuming and how many wet/dirty diapers she had throughout the day. It took several weeks, but things turned around and she began to put on weight.
Early Signs
At about 10 weeks old, we took her in for a routine check up and immunizations. It was a day we will never forget. After receiving the immunizations, we went home and within a few hours Grace began to cry. She cried for nearly 21 hrs non-stop. We called the doctor and explained to him the crying and the non-stop movement of her arms and legs. He explained that she had 4 immunizations that day and apparently was having a bad reaction. He let us know that it was not uncommon and that moving forward we’d split the immunizations up over multiple days. Looking back now, we believe the stress of the immunization actually initiated 21 hours of seizures. Read more…
The Diagnosis
April 2005, our world would be shattered. It was an ordinary day, everything was normal. It was the afternoon and I was changing Grace’s diaper and noticed a bit of blood. It didn’t alarm me initially as we had just begun to wean her from the bottle and I figured she might have not been drinking enough fluids and had gotten a urinary tract infection. I called the doctor and she asked me to come in that afternoon. I was completely unprepared for the conversation. She examined Grace and when I asked if she thought it was a urinary tract infection, she without pause said, ‘no’. She sat down and I’ll never forget the feeling of absolute fear and helplessness I felt when she began to tell us the severity of the issue. Read more…
The Surgery
Grace’s progression through the symptoms of HH continued and in July 2006, she began to have hypothalamic rages. The onset of these rages were the turning point for our family in making the decision to move forward with surgery. Grace’s quality of life had been slowly slipping away since her diagnosis, but the rages are beyond explanation. They destroy every bit of happiness and joy within the person experiencing them. They come on without warning and they leave a trail of guilt and sorrow with the person. Grace would be devastated and so incredibly remorseful afterwards. She’d tell us she didn’t know why she was doing it and that she had no control to stop. It was the most difficult aspect of HH for her and our family. She was helpless and we were equally as helpless. Read more…
Life After Surgery
I remember the day when Sarah made her first visit to see Grace and me at the hospital in Sacramento. It had been nearly 6 weeks since I had last seen my sweet little girl. I was amazed when I saw her walking down the hall towards Grace’s room. I barely recognized her, during the separation she got so tall and lost much of her ‘baby fat’. She looked like a little girl and not my baby from just two months earlier. The bigger surprise came when she began to ask questions about when Grace and I would be able to finally come home. My little girl had learned to talk while we were in Arizona. I wasn’t there for this huge milestone of Sarah’s and I felt like both of us had been cheated of this time together. Read more…
Seizures & Rages Return
By July 2009, we began noticing ‘episodes’ of odd behaviors and blips of aggressions from Grace. These were completely out of character and we feared our world was once again going to be turned upside down. Grace was scheduled for a video-EEG and it didn’t indicate anything that would explain these ‘episodes’. However, as parents of a child with HH, we know when our children are seizing. Even though the EEG isn’t showing anything it doesn’t indicate seizures are not occurring, it simply means the seizures are localized in the center of the brain and the EEG electrodes aren’t detecting them at the surface of the scalp. Read more…
SUDEP Strikes
On December 11 at 2:30 am, we found Grace in her room having a seizure. The seizure was not one of Grace’s typical seizures. It was not a gelastic or a complex partial. Grace was unresponsive and this was not typical of Grace during her seizures. We knew something was terribly wrong. We called 911 and administered her clonazepam, which was for seizures lasting longer than 3-5 minutes. Grace was breathing and continued throughout the trip to the hospital. However, as soon as the ambulance pulled up to the doors, she went into cardiac arrest. Once in the ER the team brought her back, but she never regained consciousness. Her heart was weak and her body couldn’t fight anymore. Read more…
Grace's Story | Lessons from Grace and honoring her memory
Lessons from Grace
The specific trigger to the events that early morning will never be known. We only know for sure that Grace was having a seizure when we found her that early morning. She went into cardiac arrest and then catastrophic metabolic failure. Grace had epilepsy, precocious puberty, rages, and suffered from depression and anxiety due to the hypothalamic hamartoma. Grace had diabetes insipidus, lack of temperature regulation, hypothalamic obesity, and acquired Prader-Willi syndrome due to her damaged hypothalamus. Grace was a strong spirit, but unfortunately the body she lived with was fragile.
Grace’s medical state was complex and it was not uncommon for her to puzzle the doctors who treated her and the ER doctors were no exception. They were overwhelmed by the way her body was shutting down and believed due to lack of oxygen at some point in the events of that morning, she suffered severe brain trauma and it was the catalyst for her hypothalamus to stop working completely. Our sweet angel had struggled her entire life and on this day she returned to Heaven. We find comfort in knowing she’s no longer living with daily seizures, rages, pain, and all the other daily struggles she was inflicted with as a result of her hypothalamic tumor. She’s free from all of it.
Over the years, Perry and I had talked about Grace’s 2007 surgery. It didn’t come without a price. A price Grace suffered with everyday. She lived with more medical conditions, medications and struggles then before surgery. We know too that without that surgery Grace would have continued to have more seizures, more rages and be taken away from us both emotionally and cognitively. The surgery saved Grace. The surgery allowed us to keep our Grace on this earth a bit longer. It provided Grace the opportunity to have more true, sincere moments of joy and happiness than many individuals experience in a life time. It provided Grace the opportunity to teach her family the importance of embracing today, finding happiness in today and loving those around you today. Grace lived in the moment. She found happiness in the simple routine of her day. She wanted no more that to be at home with her family telling us ‘I love you’ each time we left her sight. So, do we regret her 2007 surgery? No, we never have or ever will regret the surgery which gave us 4.5 years longer with our Grace. Those are 4.5 years of memories we will forever cherish.
We will continue to invest our time and effort on the nonprofit, Hope For Hypothalamic Hamartomas (www.hopeforhh.org), we helped found. Our hope is that someday the work we do here will bring about a cure to this condition. People continue to ask what they can do to help and at this time we ask only you to help us spread awareness of Grace’s condition with other friends, family and any doctors you interact with. Ask them to check out the website, ask them to donate to our cause, ask them to be aware of the risks of death as a result of epilepsy and a fragile hypothalamus.
We continue to feel blessed by the days of laughter and joy we experienced together with Grace and hold each one of them close to our hearts. From the words of our sweet Grace, ‘Have a good day’. We know she wanted that for all us while she was here and now she is wanting the same as she watches us from Heaven.