"I don’t know how many times my children have died in my arms and I have had to bring them back to life, once even on the side of the road on I-94."
That is how Annandale High School teacher Nick Hadfield described what it is like to have two critically ill children, Brady and Madalynn. Nick, Brady, and Maddie, along with mother Melissa have been on an incredibly tough journey.
Three-year old Brady has spent over 400 days in the hospital since he was born. He was diagnosed as having had a severe brain hemorrhage and a stroke in utero. In the first three years of his life, Brady underwent six brain surgeries, and 10 major hospitalizations.
Seven-month-old Maddie has been a patient at the University of Minnesota’s Amplatz Children’s Hospital since she was born because of congenital heart defects. Maddie has had at least 12 surgical procedures, seven of which were open heart surgeries. Maddie has been home just one weekend in her young life, Labor Day 2011.
Brady’s story
Brady weighed 8 pounds, 20 ounces and was 21 inches long at birth, but the brain hemorrhage and stroke he suffered in utero, left the newborn with extensive bruising from ear to ear over the top of his head and severe jaundice. Most of the left side of his brain was injured and some of his right side as well. He was diagnosed with Neonatal Alloimmune Thrombocytopenia, NAIT, which is a blood related disease that affects expectant mothers and their babies and is characterized by low blood platelet counts and jaundice.
NAIT happens when an unborn baby’s platelets are not recognized by the mother’s body and she makes antibodies which attach to the baby’s platelets. With rapid brain development occurring during the final three to four weeks prior to birth, Brady’s body was sending extra blood to the brain, which resulted in him having a stroke.
In December 2008 the pediatric neurosurgeon noticed that Brady’s eyes were sun-downing, a condition where the eyes gaze downward. A week later Brady had an MRI and was examined by a pediatric ophthalmologist. The additional pressure and fluid during the stroke and hemorrhage damaged the optic nerve, so it could not interpret what the brain was seeing. This condition was diagnosed as Cortical Visual Impairment Damage and it has left Brady legally blind in his left eye.
"As parents, this was pretty tough news for us to hear," Hadfield said. "When the doctors discussed possible long-term effects for Brady, we learned that he will likely experience some severe motor difficulties and cognitive delay."
On Jan 26, 2009, Brady had his first brain surgery. A shunt was put in to drain excess fluid and relieve pressure on his brain. The shunt is basically a gravity controlled valve with a catheter on each end to drain the fluid into his abdomen. The surgery went well and Brady was home from the hospital within a week. Six weeks passed and suddenly Brady became very irritable and his temperature remained consistently high, more than 102 degrees, and he was vomiting frequently.
On March 6, Brady was admitted to the hospital again and was diagnosed with a staph infection that caused by bacterial Meningitis. After 22 days at the hospital, Brady came home but he was subsequently hospitalized several more times for an upper respiratory infection, viral pneumonia, and gastroenteritis. In addition, he suffered from chronic ear infections and had tubes placed in his ears on his first birthday.
On July 16, 2009 Brady was diagnosed with Craniosynostosis, which is premature fusion of the sutures in the skull. He has had ongoing trouble with his shunts as well, with something going wrong with them about every nine months. Lately, Brady has been experiencing a great deal of vomiting and doctors do not know what is causing it. The vomiting was so bad the weekend of Feb. 11 that Nick had to take Brady down to Amplatz.
"After six brain surgeries and 10 major hospitalizations with Brady, we found ourselves in familiar territory after our daughter Madalynn was born (in) July of 2011," Nick said. "The two have been hospitalized five times together since Maddie’s birth, one in which Brady had his seventh brain surgery to insert a new shunt."
Madalynn’s story
Brady’s sister Madalynn Sue Hadfield, Maddie, was born July 22, 2011, weighing 5 pounds, 14 ounces and measuring 18 inches long. Three months before Maddie’s birth, doctors noticed during a level two ultrasound, that she had Congenital Heart Disease which encompasses multiple heart defects. Maddie was diagnosed with Coarctation of the Aorta, Double Outlet Right Ventricle, D-Malposition of Transposition of the Great Arteries, Ventricular Septic Defect, and Atrial Septic Defect.
During the remainder of her pregnancy, Melissa had weekly infusions of IVIG and was on 100 mg of prednisone daily to ensure that healthy antibodies were introduced to her system and to keep her from fighting off Maddie’s blood platelets which had caused Brady’s severe brain hemorrhage and stroke before birth. It was hoped that these measures would prevent her from succumbing to NAIT like her brother. Maddie had a 100 percent chance of getting NAIT unless Melissa went through treatment, which would have most certainly led to a severe brain hemorrhage.
"We are very happy to say that Maddie’s blood platelets were right where they needed to be after birth," Nick said. "She was tested and she had 142,000 blood platelets (typically babies should have about 150,000 blood platelets)," Melissa said.
Since Maddie was born, doctors and staff at the University of Minnesota Amplatz Children’s Hospital have been working to create surgical plans to correct Maddie’s Congenital Heart Disease. Maddie has only been home for 14 days since birth and she has undergone 12 surgical procedures, including seven open heart surgeries. She has also had surgical procedures to correct severe reflux disease and the placement of her feeding tube.
Maddie’s next surgery could come at any time and will take place in either Boston or Milwaukee. It is going to be a very complex procedure because surgeons first need to cut the pulmonary valve to gain access to the aortic arch. The entire aortic arch needs to be augmented by transplanting another aortic arch to increase the size of it and help her heart sustain significant blood flow. After the arch is augmented, the pulmonary valve will be sutured to widen the narrowing on its back-side where it was banded in August to allow sufficient blood flow. Finally, her ventricularseptal defect, also known as a hole in the heart, needs to be closed.
"Boston has already given us their opinion. We are waiting on Milwaukee to get back to us," Melissa said. "As soon as we hear back we will be making a decision as to which hospital is the best for Maddie and will be traveling to either Boston or Milwaukee for this big surgery."
Nick and Melissa are concerned about this surgical procedure because it will involve stopping Maddie’s heart.
"With no blood to the brain for a considerable amount of time, it could cause Maddie to have some brain damage," Nick said. He and Melissa are hoping that Maddie will be discharged soon from Amplatz and spend some time at home before this next major surgery.
Melissa and Nick
Melissa is a Branch Manager for Wells Fargo Bank, and is currently on an unpaid leave from her position. Melissa will likely lose her job in April when the leave runs out. She spends her week at Amplatz Children’s Hospital at Maddie’s bedside and sleeps right in Maddie’s room.
"We live 59.75 miles from our home in Clearwater to the Amplatz Children’s Hospital, but the Ronald McDonald house declined our application because there is a 60-mile minimum," Nick said. On weekends, Nick and Melissa trade places so she can be at home to spend time with Brady. Nick is a special education teacher at Annandale High School.
"The other teachers and my special education students at Annandale High School have been a great source of support for me," Nick said. His parents, Mr. and Mrs. Jim Hadfield of Monticello have also been a great source of helping hands and support. It has also put a major financial strain on the family. Brady and Maddie’s medical costs have been phenomenal. While their insurance has no lifetime cap, they still have medical bills to pay dating back to 2009.
"While our family has been divided since Maddie’s birth, we are doing our best as parents to be present for both of our children and provide them with the love and support they need," Nick said. "It doesn’t take much to know they return our love ten-fold and keep us strong; such fierce little warriors they are!"
Melissa said, "we feel very blessed to have such wonderful family and friends in our lives to help us during this time – it makes many of the challenges we face a little easier to bear."
Hadfield benefit March 3
Annandale and Clearwater friends and family are planning a fundraiser for the Hadfield family Saturday, March 3, from 4:30 to 7:30 p.m. at Annandale High School. Sloppy joes will be served and there will be a silent auction, live music by FROM 35, a bake sale, and activities for the kids.
Tickets can be purchased in advance or at the door. Advance tickets are at Annandale High School, Annandale Middle School, Bendix Elementary, Community Education Center, Marketplace, and the Annandale State Bank.
Donation checks can be made out to "We Heart the Hadfields" and sent to: Annandale State Bank PO Box 310, Annandale MN 55302.
"Team Hadfield," the benefit planning committee, feels very blessed to be organizing this event for such a deserving family.
"The Hadfields have many people uplifting them in thoughts and prayers; the outreach stretches across the country," said Kari Dircks, a representative from the committee. "This family is unbelievably strong and dedicated in not only fighting for their family, but for life itself. They are an inspiration to us all. Please support the Hadfields at the benefit on March 3."