Living with...Twin-to-Twin Transfusion Syndrome (TTTS)

Twelve years ago, Kate found out she was pregnant. In her 2nd Trimester, it was discovered that she had not one, not two, but actually three babies. Baby A & Baby B were diagnosed with Twin-to-Twin Transfusion Syndrome (TTTS). When there is a shared placenta in the uterus, there is potential for sharing blood circulation between the two babies, TTTS. Typically, one baby will receive more blood (the “recipient”) than the other baby (the “donor”). And in Kate’s case, she also had Baby C in her uterus that was unaffected by the TTS. Kate was able to deliver all three babies, Baby A & Baby B are Spencer & Quinn and Baby C is Max.

Both Spencer & Quinn were diagnosed with Cerebral Palsy from cerebella atrophy. For both boys, they have motor delays that require them to have assistance for all standing and walking activities. Their Physical Therapist has helped the family choose the best adaptive equipment to keep them as independent as possible. In school, they use wheelchairs. However, at home and in the community, they will use their scooters more. The scooters are more open allowing them to independently reach for things. Both Spencer & Quinn use walkers as well for more independence.

(Spencer is in green; Quinn is in red. Carly and Kate!>

They both also have expressive speech delays. Kate explained that they have a lot to say, it’s just hard to understand them unless you are around them all of the time and have “learned their language”. Both boys receive Speech Therapy to help them make their speech more clear to everyone that speaks with them. Both Spencer & Quinn use Dynavox Talkers to make sure that their needs are met.

Spencer & Quinn both attended their local Elementary School through the 4th Grade. For 5th & 6th Grade, they attend an Educational Life Skills (ELS) Class in a neighboring town. The ELS Class focuses on teaching life skills to increase their independence skills. For example, they learn about money and actually go shopping to understand the practical life application. Spencer & Quinn each have a 1:1 Classroom Aide to help them maximize their learning. Gym, Music, and Lunch are spent with the rest of their classmates to maintain and develop their socialization skills with their peers.

Kate is on the Special Education Board at her school. She recommends families being involved at this level whenever possible. Not only has it helped her boys get the services they need because she understands what is available, but she has been able to help other families navigate the Special Education System as well. Kate also credits a lot of help from the community in helping her boys achieve all that they do.

Although Spencer and Quinn are similar in so many ways, they are individuals too! Here’s a little about each one of them:

Spencer:

• Loves hand-held gadgets
• Always looking for new iphone apps
• Loves music
• Chooses to play on the computer a lot
• Is active & motivated
• Brings a smile to everyone’s face

Quinn:

• The “lazy” or social one
• Loves TV – learns all about the characters and movie stars and can recognize them by their voices
• Loves music – BIG Justin Bieber fan
• Has a great imagination

In addition to Spencer & Quinn, Kate also has Max (Baby C) and a girl Carly. Both Max and Carly are nurturing and caring. Carly takes on more of the “teacher” role with them by playing “school” with them and teaching what she is learning in school. Kate says that Carly’s acceptance of other kids with special needs is one of her best qualities. Max is the “protector”. He is very proud of his brothers. He loves including them when he plays with the Xbox or the Wii.

Kate describes Spencer & Quinn as a gift and her joy and that they are “thriving and happy boys”! She loves watching them learn new things every day and says she’s “so lucky for these boys”.