Robyn Ward's Story
Conditions: Ventrical Septal Defect (VSD), Atrial Septal Defect (ASD), Wolff-Parkinson-White Syndrome (WPW)
Baby Robyn Arielle Ward was born on April 6th, 2004. Her big sister Rebecca Ann (4 yrs old) was so excited to have her wish for a baby sister come true. We brought Robyn home from the hospital on the evening of April 7th. On April 11th she had a fever of 40o and was lethargic. There was a foul odor coming from her umbilical cord. Thinking that it was infected, we took Robyn to Emergency at the Winnipeg Children’s Hospital. After blood work, a failed lumbar puncture and a urinalysis Robyn was admitted for 48 hours of intravenous antibiotics. The doctor thought the fever was related to Group B strep.
The next morning the nurse took Robyn’s heart rate – it was over 300 beats per minute. An ER doctor was called in and he did an ECG and paged the cardiologist, Dr. Saxena. They put a bag of ice on her forehead and over her eyes. Her heart rate came down to 130 BPM. Robyn was transferred to NICU. The Cardiologist, Dr. Saxena, informed us that her episode of Supraventricular Tachycardia (SVT) was caused by Wolff-Parkinson-White Syndrome (WPW), an abnormal electrical pathway in her heart. Robyn began taking Propanolol to control her heart rate.
Throughout the night and the next day Robyn had many episodes of fast breathing. On April 13th Robyn had an Echocardiogram. Dr. Saxena found a moderate to large Ventricular Septal Defect (VSD) as well as an Atrial Septal Defect (ASD). Her heart was found to be enlarged and she had fluid in her lungs. She began taking Aldactazide, a diuretic to help her get rid of the extra fluid.
April 14th was a great day and we were preparing to go home the following day. That night she went into Congestive Heart Failure with many more incidences of difficult breathing. Throughout the day, she had three episodes of SVT: a short one at rest that was self-resolved and two that were brought on by extreme agitation and crying which were resolved by a cold cloth on her forehead. We were no longer going home. The Propanolol was not effectively controlling her heart rate; she began taking Sotalol instead.
Robyn continued to be monitored in the NICU until April 20th, when we were finally able to take Robyn home. Robyn was taking Aldactazide and Sotalol twice a day and the public health nurse dropped by twice weekly to check her weight. Each week we visited either her pediatrician or the Variety Children’s Heart Centre.
At Robyn’s May 10th appointment, Dr. Saxena was concerned about her lung pressure, which continued to be high, as well as the lack of change in the size of the VSD. She told us to be prepared to go to Edmonton for heart surgery to repair the VSD and the WPW in a couple of months. On May 25, at her heart centre appointment, Robyn’s liver was enlarged. There was a slow in her weight gain, more fast breathing and vomiting after feeding. This all indicated a worsening in her Congestive Heart Failure. Dr. Saxena added Lasix twice daily to Robyn’s medication.
During the next three days, Robyn continued to vomit and not hold down her food. Her work of breathing increased with lots of tugging in her neck and in-drawing in her ribs. After paging Lea, the nurse clinician, we went to the Heart Centre on May 28th for an unscheduled check-up. Robyn was admitted to the Children’s Hospital. She began tube feedings (NG tube) to reduce her work of feeding and introduce extra calories. Her medication doses were doubled and her electrolytes were carefully monitored.
Surgery in Edmonton was booked for June 3rd. Rob and I decided to have Rebecca Ann and my mom travel to Edmonton as well. We felt that it was important for Rebecca to be part of this experience. My mom was glad to come along to be with Robyn, care for Rebecca and provide support for us as needed.
We arrived in Edmonton on June 1st and Robyn was admitted to the Cardiac Ward of the Stollery Children’s Hospital. Robyn’s surgery was changed to June 8th. We were glad for the extra time before surgery, as Robyn continued to feed through the NG tube and was able to gain weight. The care that we received in this wonderful facility was fantastic. We found the staff at Stollery Children’s Hospital was committed to a family-centered approach, providing care and support for all.
Thanks to the staff at the VCHC in Winnipeg, we found ourselves very well prepared for the experience of surgery in Edmonton. Robyn’s surgery went very well. Dr. Ross patched her large VSD, removed muscular bundles from her right heart and stitched up the ASD. The Cardiology team decided not to repair her Wolff-Parkinson-White Syndrome. If necessary, this will be done as an Ablation procedure when she is older.
Of course, we experienced some setbacks during Robyn’s recovery from surgery. The day following surgery, after being suctioned and turned over, Robyn’s heart rate raced up to 264 beats per minute and then crashed to 0. She was connected briefly to a pacemaker and given medication to control her heart rate. She came off the ventilator on June 11th and was moved from the PICU back to the Cardiac Ward on June 13th. After an echocardiogram, we found that Robyn had a moderate tricuspid valve leak and significantly decreased heart function. A combination of Captopril and a lowered dose of Sotalol helped improved her heart function.
On the morning of June 16th Robyn went into SVT. Three doses of Adenosine were administered and stopped the SVT. We were moved to the ICE Room. After a day of close observation and support, we returned to a regular room. Robyn had the NG tube removed and finally began nursing.
Another echocardiogram showed no improvement in Robyn’s heart function. We met with Dr. Kantoch, who specializes in arrhythmias. He gave us four options of treatment: 1) do nothing and hope that her heart function improves; 2) Captopril (which lowers Robyn’s blood pressure too far); 3) Digoxin (which causes atrial fibrillation and death in adults with WPW, but has not been documented to have this result in babies); and 4) an Ablation procedure (this is not recommended on babies as the mortality rate is very high). The decision was left up to us. Robyn moved back to the ICE Room on June 18th to begin taking Digoxin.
Days later arrangements were made for us to return to Winnipeg. We flew home on June 22nd. Robyn now takes Sotalol for her Wolff-Parkinson-White Syndrome and Digoxin for her decreased heart function. Robyn has continued to gain weight and is getting better at nursing.
We are grateful for the family-centered care that we received from the Stollery Children’s Hospital and continue to receive from the staff of the Variety Children’s Heart Centre. We are truly glad to be home and are thankful for the prayers and support of family and friends through our heart journey. We appreciate the thoughtful kindness and gentle care shown to our family from the many special people that we have met along the way.